THE OFFICIAL PARENT’S SOURCEBOOK
on
BRONCHOPULMONARY DYSPLASIA
J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your child’s physician. All matters regarding your child’s health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before administering any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Parent’s Sourcebook on Bronchopulmonary Dysplasia: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83143-2 1. Bronchopulmonary Dysplasia-Popular works. I. Title.
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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors, or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for parent use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
[email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.
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Dedication To the healthcare professionals dedicating their time and efforts to the study of bronchopulmonary dysplasia.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to bronchopulmonary dysplasia. All of the Official Parent’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Parent’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Parent’s Sourcebook series published by ICON Health Publications.
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About ICON Health Publications In addition to bronchopulmonary dysplasia, Official Parent’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Asthma
·
The Official Patient's Sourcebook on Chronic Obstructive Pulmonary Disease
·
The Official Patient's Sourcebook on Cystic Fibrosis
·
The Official Patient's Sourcebook on Idiopathic Pulmonary Fibrosis
·
The Official Patient's Sourcebook on Primary Pulmonary Hypertension
·
The Official Patient's Sourcebook on Pulmonary Lymphangioleiomyomatosis
·
The Official Patient's Sourcebook on Respiratory Failure
·
The Official Patient's Sourcebook on Sarcoidosis
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents vii
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 4 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS .................................................... 7 CHAPTER 1. THE ESSENTIALS ON BRONCHOPULMONARY DYSPLASIA: GUIDELINES ........................................................................................... 9
Overview............................................................................................................... 9 What Is Bronchopulmonary Dysplasia? ............................................................ 11 What Is BPD?..................................................................................................... 12 How Common Is BPD? ...................................................................................... 13 What Causes BPD? ............................................................................................ 14 What Are the Signs and Symptoms of BPD?..................................................... 14 How Is BPD Diagnosed?.................................................................................... 15 How Is BPD Treated?......................................................................................... 16 What Are the Short- and Long-Term Consequences of BPD?........................... 17 Living with BPD ................................................................................................ 18 Can BPD Be Prevented?..................................................................................... 19 How BPD Develops ............................................................................................ 21 More Guideline Sources ..................................................................................... 24 Vocabulary Builder............................................................................................. 27
CHAPTER 2. SEEKING GUIDANCE ....................................................... 33
Overview............................................................................................................. 33 Finding Doctors.................................................................................................. 35 Selecting Your Doctor ........................................................................................ 36 Working with Your Child’s Doctor.................................................................... 37 Broader Health-Related Resources ..................................................................... 38
CHAPTER 3. CLINICAL TRIALS AND BRONCHOPULMONARY DYSPLASIA ........................................................................................... 39
Overview............................................................................................................. 39 Recent Trials on Bronchopulmonary Dysplasia................................................. 42 Benefits and Risks............................................................................................... 49 Keeping Current on Clinical Trials.................................................................... 53 General References.............................................................................................. 53 Vocabulary Builder............................................................................................. 54
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL ..................................................... 57
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CHAPTER 4. STUDIES ON BRONCHOPULMONARY DYSPLASIA ........... 59
Overview............................................................................................................. 59 The Combined Health Information Database ..................................................... 59 Federally-Funded Research on Bronchopulmonary Dysplasia .......................... 62 E-Journals: PubMed Central .............................................................................. 75 The National Library of Medicine: PubMed ...................................................... 76 Vocabulary Builder............................................................................................. 76
CHAPTER 5. BOOKS ON BRONCHOPULMONARY DYSPLASIA ............. 81
Overview............................................................................................................. 81 Book Summaries: Federal Agencies .................................................................... 81 Book Summaries: Online Booksellers ................................................................. 82 The National Library of Medicine Book Index ................................................... 83 Chapters on Bronchopulmonary Dysplasia........................................................ 84 General Home References ................................................................................... 85 Vocabulary Builder............................................................................................. 86
CHAPTER 6. MULTIMEDIA ON BRONCHOPULMONARY DYSPLASIA ... 87
Overview............................................................................................................. 87 Bibliography: Multimedia on Bronchopulmonary Dysplasia ............................ 87 Vocabulary Builder............................................................................................. 88
CHAPTER 7. PHYSICIAN GUIDELINES AND DATABASES ..................... 89
Overview............................................................................................................. 89 NIH Guidelines................................................................................................... 89 NIH Databases.................................................................................................... 92 Other Commercial Databases ............................................................................. 98 The Genome Project and Bronchopulmonary Dysplasia.................................... 99 Specialized References....................................................................................... 103
CHAPTER 8. DISSERTATIONS ON BRONCHOPULMONARY DYSPLASIA ........................................................................................................... 105
Overview........................................................................................................... 105 Dissertations on Bronchopulmonary Dysplasia............................................... 105 Keeping Current ............................................................................................... 106
PART III. APPENDICES...................................................... 107 APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS ........... 109
Overview........................................................................................................... 109 Your Child’s Medications: The Basics.............................................................. 110 Learning More about Your Child’s Medications ............................................. 111 Commercial Databases...................................................................................... 112 Contraindications and Interactions (Hidden Dangers) ................................... 113 A Final Warning .............................................................................................. 114 General References............................................................................................ 115
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 117
Overview........................................................................................................... 117
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What Is CAM? ................................................................................................. 117 What Are the Domains of Alternative Medicine?............................................ 118 Can Alternatives Affect My Child’s Treatment?............................................. 121 Finding CAM References on Bronchopulmonary Dysplasia ........................... 122 Additional Web Resources................................................................................ 125 General References............................................................................................ 126 Vocabulary Builder........................................................................................... 127
APPENDIX C. RESEARCHING NUTRITION ......................................... 129
Overview........................................................................................................... 129 Food and Nutrition: General Principles........................................................... 130 Finding Studies on Bronchopulmonary Dysplasia .......................................... 134 Federal Resources on Nutrition........................................................................ 138 Additional Web Resources................................................................................ 138 Vocabulary Builder........................................................................................... 139
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 141
Overview........................................................................................................... 141 Preparation ....................................................................................................... 141 Finding a Local Medical Library ...................................................................... 142 Medical Libraries Open to the Public............................................................... 142
APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE ................... 149
Overview........................................................................................................... 149 Your Child’s Rights as a Patient ...................................................................... 149 Parent Responsibilities ..................................................................................... 153 Choosing an Insurance Plan............................................................................. 154 Medicaid ........................................................................................................... 156 NORD’s Medication Assistance Programs ..................................................... 157 Additional Resources ........................................................................................ 157
APPENDIX F. MORE ON THE LUNGS ................................................. 159
Overview........................................................................................................... 159 Introduction...................................................................................................... 159 The Lungs: A Historical View.......................................................................... 160 Human Respiratory System ............................................................................. 162 How Do Normal Lungs Work? ........................................................................ 162 Lung Structure and Function: The Big Picture............................................... 163 The Conducting Airways ................................................................................. 164 Gas Exchange.................................................................................................... 164
ONLINE GLOSSARIES ....................................................... 169 Online Dictionary Directories.......................................................................... 171
BRONCHOPULMONARY DYSPLASIA GLOSSARY . 173 General Dictionaries and Glossaries ................................................................ 186
INDEX...................................................................................... 188
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Contents
Introduction
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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that all parents incorporate education into the treatment process. According to the AHRQ: Finding out more about your [child’s] condition is a good place to start. By contacting groups that support your [child’s] condition, visiting your local library, and searching on the Internet, you can find good information to help guide your decisions for your [child’s] treatment. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist parents in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3 Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
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Bronchopulmonary Dysplasia
Since the late 1990s, physicians have seen a general increase in parent Internet usage rates. Parents frequently enter their children’s doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding children through sound therapies. The Official Parent’s Sourcebook on Bronchopulmonary Dysplasia has been created for parents who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to bronchopulmonary dysplasia, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on bronchopulmonary dysplasia. Given parents’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on bronchopulmonary dysplasia should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your child’s
Introduction
3
best option. This sourcebook is no exception. Each child is unique. Deciding on appropriate options is always up to parents in consultation with their children’s physicians and healthcare providers.
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching bronchopulmonary dysplasia (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other parent networks dedicated to bronchopulmonary dysplasia. It also gives you sources of information that can help you find a doctor in your local area specializing in treating bronchopulmonary dysplasia. Collectively, the material presented in Part I is a complete primer on basic research topics for bronchopulmonary dysplasia. Part II moves on to advanced research dedicated to bronchopulmonary dysplasia. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on bronchopulmonary dysplasia. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading covering bronchopulmonary dysplasia or related disorders. The appendices are dedicated to more pragmatic issues facing parents. Accessing materials via medical libraries may be the only option for some parents, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing children with bronchopulmonary dysplasia and their families.
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Bronchopulmonary Dysplasia
Scope While this sourcebook covers bronchopulmonary dysplasia, doctors, research publications, and specialists may refer to your child’s condition using a variety of terms. Therefore, you should understand that bronchopulmonary dysplasia is often considered a synonym or a condition closely related to the following: ·
Perinatal Bronchopulmonary Dysplasia
In addition to synonyms and related conditions, physicians may refer to bronchopulmonary dysplasia using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for bronchopulmonary dysplasia:4 ·
770 other respiratory conditions of fetus and newborn
·
770.7 chronic respiratory disease arising in the perinatal period
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to bronchopulmonary dysplasia. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by parents, patients, or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
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As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? When their child has been diagnosed with bronchopulmonary dysplasia, parents will often log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. Parents are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with bronchopulmonary dysplasia is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. Before beginning your search for information, it is important for you to realize that bronchopulmonary dysplasia is considered a relatively uncommon condition. Because of this, far less research is conducted on bronchopulmonary dysplasia compared to other health problems afflicting larger populations, like breast cancer or heart disease. Nevertheless, this sourcebook will prove useful for two reasons. First, if more information does become available on bronchopulmonary dysplasia, the sources given in this book will be the most likely to report or make such information available. Second, some will find it important to know about patient support, symptom management, or diagnostic procedures that may be relevant to both bronchopulmonary dysplasia and other conditions. By using the sources listed in the following chapters, self-directed research can be conducted on broader topics that are related to bronchopulmonary dysplasia but not readily uncovered using general Internet search engines (e.g. www.google.com or www.yahoo.com). In this way, we have designed this sourcebook to complement these general search engines that can provide useful information and access to online patient support groups.5 While we focus on the more scientific aspects of bronchopulmonary dysplasia, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find parent For example, one can simply go to www.google.com, or other general search engines (e.g. www.yahoo.com, www.aol.com, www.msn.com) and type in “diseasex support group” to find any active online support groups dedicated to diseasex.
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Bronchopulmonary Dysplasia
groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you and your child the most options in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your child’s treatment plan. The Editors
7
PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on bronchopulmonary dysplasia. The essentials typically include a definition or description of the condition, a discussion of who it affects, the signs or symptoms, tests or diagnostic procedures, and treatments for disease. Your child’s doctor or healthcare provider may have already explained the essentials of bronchopulmonary dysplasia to you or even given you a pamphlet or brochure describing the condition. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what the doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
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CHAPTER 1. THE ESSENTIALS ON BRONCHOPULMONARY DYSPLASIA: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on bronchopulmonary dysplasia. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the parent in mind. Since new guidelines on bronchopulmonary dysplasia can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internetbased services that post them.
The National Institutes of Health (NIH)6 The National Institutes of Health (NIH) is the first place to search for relatively current guidelines and fact sheets on bronchopulmonary dysplasia. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians.
6
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
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Among them are 97 scientists who have won the Nobel Prize for achievement in medicine. There is no guarantee that any one Institute will have a guideline on a specific medical condition, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare disorders. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with bronchopulmonary dysplasia and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Heart, Lung, and Blood Institute (NHLBI); guidelines at http://www.nhlbi.nih.gov/guidelines/index.htm
Among these, the National Heart, Lung, and Blood Institute (NHLBI) is particularly noteworthy. The NHLBI provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders.7 Since October 1997, the NHLBI has also had administrative responsibility for the NIH Woman’s Health Initiative. The Institute plans, conducts, fosters, and supports an integrated and coordinated program of basic research, clinical investigations and trials, observational studies, and demonstration and education projects. Research is related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The NHLBI plans and directs research in development and evaluation of interventions and devices related to prevention, treatment, and rehabilitation of patients suffering from such diseases and disorders. It also supports research on clinical use of blood and all aspects of the management of blood resources. Research is conducted in the Institute’s own laboratories and by scientific institutions and individuals supported by research grants and contracts. For health professionals and the public, the NHLBI conducts educational activities, including development and dissemination of materials in the above areas, with an emphasis on prevention. This paragraph has been adapted from the NHLBI: http://www.nhlbi.nih.gov/about/org/mission.htm. “Adapted” signifies that a passage is reproduced exactly or slightly edited for this book. 7
Guidelines 11
Within the NHLBI, the Division of Lung Diseases (DLD) maintains surveillance over developments in pulmonary research and assesses the Nation’s need for research on the causes, prevention, diagnosis, and treatment of pulmonary diseases.8 Also within the purview of the Division are: technology development, application of research findings, and research training and career development in pulmonary diseases. The DLD plans and directs the research and training programs which encompass basic research, applied research and development, clinical investigations, clinical trials, and demonstration and education research. Two programs comprise the Division of Lung Diseases, Airway Biology and Disease Program, and the Lung Biology and Disease Program. The following patient guideline was recently published by the NHLBI and the DLD on bronchopulmonary dysplasia.
What Is Bronchopulmonary Dysplasia?9 Your baby has been diagnosed with bronchopulmonary dysplasia (BPD). BPD is a chronic lung disease of newborn infants marked by inflammation of the airways. The lungs of babies with BPD are immature or have not developed normally. Their lungs are therefore unable to perform gas exchange. Gas exchange is the primary function of the lungs. This term is used for the process by which lungs transfer oxygen from inhaled air into the bloodstream in exchange for carbon dioxide from the blood to be exhaled. Inhaled air travels to the alveoli (tiny air sacs located at the end of the conducting airways of the lungs) where it comes in contact with blood containing carbon dioxide. The blood travels through a fine network of pulmonary vessels called capillaries. Gas exchange occurs instantaneously in normal infants as the red blood cells pass through the capillaries. It does not occur adequately in BPD infants because their alveoli and capillaries are not fully developed.
8 Adapted from the DLD: http://www.nhlbi.nih.gov/about/dld/index.htm. For more information, contact: Division of Lung Diseases; National Heart, Lung and Blood Institute; ATTN: Web Site Inquiries; Two Rockledge Center, Suite 10122, 6701 Rockledge Dr., MSC 7952; Bethesda, Maryland 20892-7952. 9 Adapted from the National Heart, Lung, and Blood Institute: http://www.nhlbi.nih.gov/health/public/lung/other/bpd/index.htm.
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Lung Structure and Gas Exchange
Inhaled air travels through the airways to the alveoli. Blood is pumped out of the heart through the pulmonary arteries to a network of capillaries that surround the alveoli. The oxygen of the inhaled air diffuses out of the alveoli into the blood while carbon dioxide in the blood moves into the alveoli to be exhaled. The oxygen-rich blood is returned to the heart through the pulmonary veins.
What Is BPD? BPD is a serious, chronic lung disease of infants. The dictionary defines BPD as abnormal development or growth (dysplasia) of the lungs and air passages. BPD was first described in 1967 by William Northway, a radiologist at Stanford University, as a chronic lung disease that occurred in premature babies who needed intensive oxygen therapy to survive respiratory distress syndrome (RDS). Northway noted that the symptoms and chest x-rays of these babies were different than those seen in newborns with other lung diseases.
Guidelines 13
BPD develops most commonly during the first 4 weeks after birth. Although it is seen most often in premature babies, it can also occur in full-term babies who have respiratory problems during their first days of life. Babies who are still dependent on a respirator for oxygen at 28 days of age and whose chest x-rays are typical of BPD are considered to have the disorder. BPD can occur when a baby’s lungs which have not fully developed at birth have to begin breathing immediately and also adjust to adverse conditions outside the mother’s womb. Among the adverse conditions which injure the lungs and cause BPD are oxygen under high pressure and infectious agents such as bacteria or viruses.
How Common Is BPD? BPD is a worldwide problem. BPD and RDS together are probably responsible for most of the infant morbidity and mortality in developed countries. BPD ranks with cystic fibrosis and asthma among the most common chronic lung diseases in infants in the United States. Approximately 5,000 to 10,000 new cases of BPD (20 to 30 percent of infants surviving RDS) occur each year. Development of BPD is not limited to RDS survivors. Any newborn infant who has serious respiratory problems in its first few days after birth is at risk of developing BPD. Although BPD is most common in premature babies, it can occur in full-term infants who need mechanical ventilation and oxygen under pressure for problems such as neonatal pulmonary hypertension. Ninety percent of the infants who develop BPD are premature and weigh less than 1500 grams (3.5 pounds). In very premature infants (weighing 1 to 1.5 pounds or born after less than 22 weeks of gestation) BPD sometimes develops even in the absence of acute respiratory problems. The risk of BPD increases with decreasing birth weight and gestation period. BPD occurs in 5 percent of infants whose birth weight is over 1,500 grams; the incidence rises to 85 percent in surviving newborns weighing between 500 and 700 grams (1 to 1.5 pounds). Male gender and non-African ethnicity seem to be additional risk factors. Genetic factors also may have a role. In the late 1960s, infants with BPD who survived past 4 weeks of age were an average of 6 weeks premature and their average weight was 2,234 grams (a little more than 4.5 pounds). Improved and more sophisticated neonatal
14 Bronchopulmonary Dysplasia
critical care now makes it possible for the majority of infants weighing at least 500 grams to survive. This increased survival of very low birth weight infants is a major factor contributing to the growing incidence of BPD.
What Causes BPD? BPD does not develop in all infants for the same reason. When it was first described, doctors thought that BPD was a result of lung injury from the mechanical ventilation and supplemental oxygen provided as therapy for RDS. Today the specialists who treat BPD believe that, although RDS and premature birth play a role in the development of the disorder, these are not the only factors. Rather, BPD appears to reflect the limited ability of the baby’s lungs during its first hours and days after birth to respond to adverse situations. These challenges may include oxygen toxicity, mechanical lung trauma, infections, or pneumonia. The state of immaturity of the lung at birth and the type of lung injury probably determine how the newborn’s lungs respond and whether or not BPD actually develops.
What Are the Signs and Symptoms of BPD? The signs and symptoms of BPD and how severe they are vary from infant to infant. They reflect differences in lung maturity and in the severity of disease. Respiratory signs include: ·
Rapid shallow breathing (tachypnea), sucked-in ribs and chest (retraction), and cough
·
Movement of the chest and abdomen in opposite directions with every breath (paradoxical or see-saw respiration)
·
Wheezing
The BPD infant’s struggle to breathe is reflected in an abnormal posture of its neck, shoulders, and trunk. These babies also crane their necks as they use their neck muscles to try to get as much air as possible into their lungs. Many of the symptoms of BPD are seen with other breathing problems, for example, severe asthma. If an infant shows any of these symptoms, the doctor will conduct tests to find the cause.
Guidelines 15
How Is BPD Diagnosed? Although BPD may begin as early as 1 week of age, it is difficult to diagnose until a baby is 14 to 30 days old. A diagnosis of BPD is based on: ·
A history of lung injury in the first days after birth (Pulmonary injury can result when a respirator must be used to provide oxygen under pressure for a minimum of 3 days during the first 2 weeks of life.).
·
A continuing need for supplemental oxygen at age 28 days.
·
Persistence of the clinical signs of respiratory difficulty beyond 28 days of age.
An x-ray of the infant’s chest is also taken to help diagnose BPD. However, the most important functional criterion for the diagnosis of BPD is the need for supplemental oxygen beyond the 28th day of life. The criteria used for a diagnosis of BPD vary among neonatologists. They include how long respiratory distress exists and how long the baby needs to be on a respirator. Many doctors make a diagnosis of BPD in the second or third week of life. However, some doctors defer a diagnosis until the baby is at least 28 days old.
What Is the Outcome for Babies with BPD? Most infants over 1,500 grams birth weight (3.5 pounds) who develop BPD have severe respiratory failure in the first week of life which may continue for several weeks. Extremely premature infants (those weighing less than 1,500 grams at birth, and especially those weighing less than 1,000 grams), seem to have minimal lung disease or acute lung disease that has apparently resolved, and then symptoms of BPD begin in the second week of life. As BPD develops and progresses, the infants become increasingly dependent on oxygen and artificial ventilation. They typically display recurrent blueing or cyanotic episodes, and asthma-like symptoms. They may develop lifethreatening bronchiolitis and other pulmonary complications. They may also develop serious medical complications of the heart, kidney, gastrointestinal tract, brain, or retina. In severe cases, the baby may die. Most of these deaths occur during the baby’s first hospital stay. They are due to progressive respiratory failure, or its complications.
16 Bronchopulmonary Dysplasia
Most BPD infants will show continued slow improvement, but some may require extra weeks and months of care in the neonatal intensive care unit (NICU). It is estimated that infants with BPD require intensive in-hospital care for an average of 120 days. At 36 weeks after conception (4 weeks before the baby’s original due date), nearly a third of the infants with BPD no longer require supplemental oxygen therapy. Those who continue to require supplemental oxygen are usually otherwise growing and improving. Even if they continue to require supplemental oxygen, BPD infants may be discharged from the hospital if they are in stable condition on medication and if the family and the baby’s doctor agree that providing continuing care at home is best for the baby.
How Is BPD Treated? There is no treatment that is specific for BPD. In the NICU supportive measures and symptomatic treatment are provided to help BPD babies breathe and give their lungs time to mature. The baby’s lungs improve gradually through normal repair processes. The treatment of BPD includes three components: therapy for RDS before BPD is confirmed, therapy after BPD is diagnosed, and home care. For infants who show signs and symptoms of RDS but who are not yet diagnosed with BPD treatment may include: ·
Surfactant administration to improve lung aeration
·
Mechanical ventilators to make up for respiratory failure
·
Supplemental oxygen to insure that the baby has enough oxygen in its blood
·
Careful control of fluids to avoid pulmonary edema (accumulation of fluid in the lungs)
·
Treatment for patent ductus arteriosus, a circulatory problem sometimes found in premature infants.
·
Giving the baby medicines that improve air flow in and out of the lungs
·
Feedings and appropriate supplemental formula to prevent malnutrition.
Once the diagnosis of BPD is confirmed the following treatments are continued in the NICU: ·
Continued mechanical ventilation and supplemental oxygen to overcome respiratory failure and maintain blood oxygen levels
Guidelines 17
·
Bronchodilator medications to improve airflow in the lungs
·
Corticosteroids and other medicines to reduce swelling and inflammation of airways
·
Fluid restriction and diuretics to decrease water accumulation in the lungs
·
Antibiotics to control infections
·
Intravenous feeding of needed nutrients
·
Physical therapy to improve muscle performance and to help the lungs expel mucus.
Scientists are working to develop new drugs and methods to prevent, lessen, or repair the lung injury that is seen with BPD. Some of the areas of research include: ·
Improving respirators so that fewer complications of positive pressure ventilation occur
·
Using drugs to protect premature lungs from injury, or speed healing
·
Developing new drugs that improve lung function
The best place for the baby’s growth and development is at home with the family. It is important that the parents be loving and well-informed about the symptoms and treatment of BPD. These babies continue to have some respiratory symptoms for varying periods after leaving the hospital, and they remain in fragile health. A primary care pediatrician should be available to provide acute, long-term, and preventive health care. In addition, nurses, respiratory and physical therapists, and social services may be needed.
What Are the Short- and Long-Term Consequences of BPD? The symptoms that persist after the infant is discharged from the hospital vary. Babies with a history of BPD are more susceptible to respiratory infections and may continue to need low levels of supplemental oxygen. Some may remain dependent on a mechanical ventilator throughout early childhood. BPD survivors are at higher risk of complications after the usual childhood infections. As a precaution, hospital care may be recommended when a BPD baby becomes ill with a respiratory infection.
18 Bronchopulmonary Dysplasia
Babies who survive BPD grow more slowly than normal. This delayed growth continues into their second year of life. They usually remain smaller than normal children of the same age. Their lung growth is almost complete at 8 years of age as in all children, but they may continue to have some problems with their lung function even when they are adults. The outlook for growth and development of babies with BPD varies. It depends more on the effects of prematurity and acute respiratory failure, rather than BPD itself. In very severe cases there may be some long-term limitations. These might include abnormalities in coordination, gait and muscle tone, inability to tolerate exercise, vision and hearing problems, and learning disabilities. The risk of these problems varies greatly among individual patients but is actually quite small. Parents of BPD infants need not assume that their child has a high risk of such developmental handicaps. If they should occur, however, parents and families can obtain information about these problems from their baby’s doctors.
Living with BPD An infant with BPD may spend several weeks or months in the NICU. This is a stressful period for the parents and the family. While the baby remains in the hospital the parents should visit as frequently as possible, to bond with the baby and help the infant recognize the voices and touch of its parents. Social service agency personnel may be needed to teach parents of a baby with BPD how to play with and care for their infant. It is not uncommon for concern about the baby’s medical condition to interfere with the parents care-giving abilities. Continued monitoring of the BPD survivor’s growth and nutritional needs throughout infancy and childhood by a pediatric nutritionist can be reassuring to parents. The parents of BPD infants can take a number of other steps to help their infants recover and grow as normally as possible. These include: ·
Seeking medical help when the child shows any signs of respiratory infection, for example, irritability, fever, nasal congestion, cough, changes in breathing pattern, wheezing;
·
Limiting the exposure of the infant to infections by avoiding the use of large day-care settings and crowds;
·
Protecting the baby from exposure to cigarette smoke and other respiratory irritants in the air; and
Guidelines 19
·
Making sure that the baby and its siblings receive all routine immunizations. Some doctors now recommend shots to protect against infection with RSV (respiratory syncytial virus) which causes bronchiolitis.
Can BPD Be Prevented? At present, the only practical way to prevent BPD is to eliminate high risk pregnancies that result in low birth weight babies. Programs of regular prenatal care for women at high risk of early delivery have been shown to lower the incidence of premature babies. Scientists are studying ways to better understand the processes involved in premature labor and its prevention. In addition, research is being conducted on how to prevent or lessen the adverse effects that result when birth occurs before the lungs are mature. Ways are being sought to accelerate the process of lung maturation in infants at high risk of developing RDS and BPD. Providing corticosteroids to women at risk of premature delivery reduces infant mortality and decreases the incidence of RDS.
What Are the Healthcare Costs of BPD? Infants with BPD need intensive hospital care for an average of 120 days. In 1990, the cost of caring for these infants was more than $170,000. These infants may also require home oxygen therapy for an average of 92 days. This cost is estimated to be more than $5,000 per child per year (1990 costs). However, if the infant were hospitalized during this period, the comparable cost would be $45,000 to $50,000. The overall costs of treating infants with BPD in the United States are estimated to be $2.4 billion. This amount is second only to the costs for treating asthma and far exceeds the cost of treating cystic fibrosis.
The Role of RDS in the Development of BPD RDS is a lung disease that occurs in premature infants. It is also called hyaline membrane disease (HMD). RDS occurs because the lungs of premature babies produce too little surfactant, the critical substance that coats the inner surface of the lungs of full-term babies.
20 Bronchopulmonary Dysplasia
Within 3 to 4 hours after birth of these premature babies, proteins from the blood and from the amniotic fluid that remains in the newborn’s lungs begin to leak into the gas exchange structures (terminal bronchioles and alveolar ducts) of the baby’s lungs. These proteins and dead blood cells form a thick membranous layer called a hyaline membrane. The hyaline membrane becomes a physical barrier that prevents the entry of oxygen into the lungs. The formation of the hyaline membrane is complete within 12 to 24 hours. The lungs of most full-term infants are soft and pliable. They stretch and contract with each breath. By contrast, the lung tissue of RDS babies is stiff and these newborns must work very hard to breathe. Symptoms of RDS include grunting noises with each breath, very rapid breathing (tachypnea), poor gas exchange, periods in which breathing stops for 20 seconds or longer (apnea), abnormal contraction of the muscles between the ribs and between the breastbone (the sternum) and the chest wall, and a blue tinge in the skin around the lips and in the nail beds (cyanosis) that indicates lack of oxygen. Most RDS babies develop respiratory failure and they need mechanical breathing assistance from a ventilator (respirator) to survive. Some of the babies who survive RDS go on to develop BPD. In the early years after BPD was first reported, the treatment for RDS usually consisted of positive pressure ventilation, using a respirator to give high levels of oxygen under high pressure. Today surfactant replacement therapy is the standard treatment and it has excellent results.
Development of the NeoNatal Lung Before birth the respiratory needs of the fetus are met by the mother as her blood circulates through the placenta. The fetal lung, regardless of its stage of development, does not play a role in gas exchange. The fully developed, amniotic fluid-filled fetal lung is ready at the instant of birth to absorb the fluid and assume its own respiratory functions. The gestational age of the newborn determines the degree to which the infant’s lungs are ready to function. Most neonatal deaths occur because the infant’s lungs are not fully developed and are not ready to make the prompt transition necessary for survival outside of the womb. The alveoli, the tiny air sacs in the lung where carbon dioxide and oxygen are exchanged, develop between 16 and 24 weeks of gestation. During this time capillaries grow in the lung tissue. Blood that is ready for gas exchange will flow through these capillaries. This period is called the canalicular stage
Guidelines 21
of lung development. It is also marked by the appearance of the primitive acinus, the future lung tissue responsible for gas exchange. The cells that line the alveoli are called epithelial cells. During this period of prenatal development these epithelial cells begin to change into type I and type II cells. After birth gas exchange occurs across the type I epithelial cells which are a flattened version of type II cells; type I cells form the air/blood barrier. Type II epithelial cells become the sites for surfactant production. Significant surfactant production does not normally occur until 34 weeks of gestation. Toward the end of this developmental stage, respiration can take place because gas exchange can occur and some surfactant is present to keep the alveoli open. As a consequence, babies born at the end of the canalicular stage have a chance to survive. At this gestational age, however, their lungs are vulnerable to damage from infection, toxins, mechanical ventilation, and excessive amounts of oxygen. Oxidant radicals, a very reactive form of oxygen, are especially injurious since antioxidant defenses which normally protect the lung from the toxic effects of oxygen are not yet present in the immature lung.
How BPD Develops Many substances that cause inflammation have been associated with the development of BPD. Magnesium, selenium, and copper deficiencies have also been suggested as possible factors. The specific roles of most of these agents in causing BPD have not yet been defined. When the neonatal lung is exposed to a damaging stimulus, the following events are believed to take place, resulting in BPD: ·
Delayed development of the alveoli
·
Inflammation and edema
·
Disruption of surfactant function
·
Infection
·
Persistence of alveolitis (inflammation of the alveoli)
·
Airway changes
During the first 1 to 2 weeks after the onset of BPD, the hyaline membrane resolves. Between 2 and 4 weeks a variety of abnormal conditions may appear. These include formation of fibrous tissue in the connective tissue of
22 Bronchopulmonary Dysplasia
the lung and around the alveoli, blockage of airflow due to inflammation in the bronchioles, pulmonary emphysema (enlargement or destruction of alveoli), pulmonary hypertension (high blood pressure in the lung arteries), pneumothorax (accumulation of air in the spaces around the lung), patent ductus arteriosus, pulmonary infections, bronchial hyperreactivity, and small airway disease. The most significant abnormal changes in the lungs of BPD infants appear to take place in the terminal bronchioles and alveolar ducts; the result is greatly reduced gas exchange. Other changes include loss of the cells that line the upper and lower airways, extensive scar formation, and collapse of the airways. Respiratory failure generally results from severe airflow obstruction caused by swelling of the airway walls due to edema or plugging of the airways by mucus. Pulmonary hypertension contributes to the seriousness of the baby’s condition. Cor pulmonale and systemic hypertension are some of the cardiovascular complications of BPD. Hypercalciurea (an excess of calcium in the urine), osteopenia (decrease in bone mass), and renal calcifications (kidney stones) related to nutritional problems and adverse effects of various treatments can also occur with BPD.
Programs of the NHLBI on BPD The NHLBI is promoting studies of how the normal lung develops and how its arrested or altered development leads to BPD. The goal of these efforts is to define the cellular events and reactions that occur as BPD develops (pathogenesis) and to understand the abnormal lung function (pathophysiology) of BPD. Research scientists are seeking ways to promote lung maturation and to forestall or minimize the consequences of lung prematurity at birth, to design more effective treatment methods for BPD, and to prevent prematurity. Some highlights of the NHLBI-supported research accomplishments are the following: An NIH Consensus Development Conference held in 1994 concluded that antenatal administration of corticosteroids to women at risk of premature delivery enhances fetal maturation and reduces mortality, respiratory distress, and intraventricular hemorrhage (bleeding into the brain) in preterm infants. Implementation of this recommendation has resulted in a substantial decrease in neonatal morbidity and mortality, as well as substantial savings in healthcare costs.
Guidelines 23
The Collaborative Program for Research in BPD, established by the NHLBI in 1994, is supporting a multi-institutional consortium of interactive research grants which enables established investigators with different backgrounds and expertise to undertake a collective study of lung maturation using a baboon model of BPD. A major goal of this program is to develop strategies for both prevention and treatment of BPD. The baboon model is facilitating studies that are not possible in human patients. The gene for Thyroid Transcription Factor-1 (TTF-1) has been identified. TTF-1 appears to regulate lung formation during gestation. Some studies show that TTF-1 is shut off following lung injury in animals as well as in infants with BPD. This finding suggests that functional failure of TTF-1 may be responsible for the abnormal lung repair that accompanies BPD. Administration of retinoic acid, a derivative of vitamin A, has been shown to induce the formation of alveolar structures in newborn rats. Extrapolated to premature or newborn infants, this finding could provide a rationale for the suggested use of vitamin A in the management of BPD. Pulmonary neuroendocrine cells (PNECs) and the peptides they produce (for example, bombesin-like peptide, BLP) influence bronchial and vascular smooth muscle contractility, glandular secretion, and lung growth and development. Hyperplasia (abnormal increases in the number) of PNECs seems to be associated with airway epithelial regeneration during transition to BPD. Abnormally excessive secretion of BLP may be responsible for the peribronchial fibrosis, obliterative bronchiolitis, and hypertrophy of peribronchial smooth muscle in BPD. Urinary BLP levels were shown to increase during the first 24 to 72 hours after birth in premature baboons who go on to develop BPD. Furthermore, anti-bombesin antibodies can prevent or reduce the pathological changes that are characteristic of BPD in baboons.
For More Information The NHLBI Information Center is a service of the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health. The Information Center provides information to health professionals, patients, and the public about the treatment, diagnosis, and prevention of heart, lung, and blood diseases. Contact the NHLBI or visit our home page for more information.
24 Bronchopulmonary Dysplasia
NHLBI Information Center P.O. Box 30105 Bethesda, MD 20824-0105 Telephone: (301) 592-8573 Fax (301) 592-8563 Home page: http://www.nhlbi.nih.gov The following organizations may have additional information on BPD: American Lung Association 1740 Broadway New York, NY 10019 Telephone: (212) 315-8700 e-mail:
[email protected] Home page: http://www.lungusa.org National Organization for Rare Diseases, Inc. (NORD) P.O. Box 8923 New Fairfield, CT 06812-8923 Telephone: (203) 746-6518; or (800) 999-6673 e-mail:
[email protected] Home page: http://www.nord-rdb.com/~orphan
More Guideline Sources The guideline above on bronchopulmonary dysplasia is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to bronchopulmonary dysplasia. Many of the guidelines listed below address topics that may be of particular relevance to your child’s specific situation, while certain guidelines will apply to only some children with bronchopulmonary dysplasia. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For parents wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and parentoriented healthcare information portal called MEDLINEplus. Within this
Guidelines 25
Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly parent-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search. The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “bronchopulmonary dysplasia” or synonyms. The following was recently posted: ·
Discharge guidelines for the technology dependent infant. Source: National Association of Neonatal Nurses.; 1999; 26 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1371&sSearch_string=bronchopulmonary+dysplasia
·
Evaluation anesthesia.
and
preparation
of
pediatric
patients
undergoing
Source: American Academy of Pediatrics.; 1996 September; 12 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 0999&sSearch_string=bronchopulmonary+dysplasia ·
Evidence based clinical practice guideline for managing an acute exacerbation of asthma. Source: Cincinnati Children's Hospital Medical Center.; 1999; 12 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1197&sSearch_string=bronchopulmonary+dysplasia
26 Bronchopulmonary Dysplasia
·
Evidence based clinical practice guidelines for the infant with bronchiolitis. Source: Cincinnati Children's Hospital Medical Center.; 1996 December 6 (updated 2001 November 28); 9 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2339&sSearch_string=bronchopulmonary+dysplasia
·
VHA/DOD clinical practice guideline for the management of chronic obstructive pulmonary disease. Source: Department of Defense/Veterans Health Administration.; 1999 August; Various pagings http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1810&sSearch_string=bronchopulmonary+dysplasia Healthfinder™
Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·
Ectodermal Dysplasia: Family Services and Programs Summary: Browse this page for information about national and regional family support conferences and workshops, participants directory, and referral services for EDs. Source: National Foundation for Ectodermal Dysplasias http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2344
·
The EDucator Newsletter Summary: Published ten times a year, this online newsletter contains articles on treatment and care for persons affected by the ectodermal dysplasias (ED), Foundation news, research updates, fund raising Source: National Foundation for Ectodermal Dysplasias http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2343
Guidelines 27
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to bronchopulmonary dysplasia. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and parents. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.
Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter:
28 Bronchopulmonary Dysplasia
Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Acinus: The berrylike ending of a tiny airway in the lung, where the alveoli (air sacs) are located. [NIH] Airways: Tubes that carry air into and out of the lungs. [NIH] Alveoli: Tiny sac-like air spaces in the lungs where transfer of carbon dioxide from blood into the lungs and oxygen from air into blood takes place. [NIH] Alveolitis: Inflammation of the alveoli. [NIH] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH]
Antibiotic: A drug that kills or inhibits the growth of bacteria. [NIH] Antibodies: Specific proteins produced by the body's immune system that bind with foreign proteins (antigens). [NIH] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Arteries: The vessels carrying blood away from the heart. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bombesin: A tetradecapeptide originally obtained from the skins of toads Bombina bombina and B. variegata. It is also an endogenous neurotransmitter in many animals including mammals. Bombesin affects vascular and other smooth muscle, gastric secretion, and renal circulation and function. [NIH] Bronchial: Pertaining to one or more bronchi. [EU] Bronchiole: The smaller airways of the lungs. [NIH] Bronchiolitis: Inflammation of the bronchioles, usually caused by a viral infection. [NIH] Bronchodilator: A drug that relaxes the smooth muscles in the constricted airway. [NIH] Bronchopulmonary: Pertaining to the lungs and air passages. [NIH] Calcification: The process by which organic tissue becomes hardened by a
Guidelines 29
deposit of calcium salts within its substance. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Cell: Basic subunit of every living organism; the simplest unit that can exist as an independent living system. [NIH] Chronic: Of long duration; frequently recurring. [NIH] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Congestion: Abnormal fluid accumulation in the body, especially the lungs. [NIH]
Contractility: stimulus. [EU]
Capacity for becoming short in response to a suitable
Corticosteroids: Drugs that mimic the action of a group of hormones produced by adrenal glands; they are anti-inflammatory and act as bronchodilators. [NIH] Criterion: A standard by which something may be judged. [EU] Cyanosis: Bluish color of the skin due to insufficient oxygen in the blood. [NIH]
Cyanotic: Bluish color of the skin due to insufficient oxygen. [NIH] Dysplasia: Abnormal development or growth. [NIH] Edema: Abnormal fluid accumulation in body tissues. [NIH] Emphysema: Chronic lung disease in which there is permanent destruction of alveoli. [NIH] Fetus: Unborn offspring from 7 or 8 weeks after conception until birth. [NIH] Fibrosis: Process by which inflamed tissue becomes scarred. [NIH] Gait: Manner or style of walking. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gestation: The period of development of the young in viviparous animals, from the time of fertilization of the ovum until birth. [EU] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Hypertension: High blood pressure (i.e., abnormally high blood pressure tension involving systolic and/or diastolic levels). The Sixth Report of the Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure defines hypertension as a systolic blood
30 Bronchopulmonary Dysplasia
pressure of 140 mm Hg or greater, a diastolic blood pressure of 90 mm Hg or greater, or taking hypertensive medication. The cause may be adrenal, benign, essential, Goldblatt's, idiopathic, malignant PATE, portal, postpartum, primary, pulmonary, renal or renovascular. [NIH] Hypertrophy: Nutrition) the enlargement or overgrowth of an organ or part due to an increase in size of its constituent cells. [EU] Immaturity: The state or quality of being unripe or not fully developed. [EU] Immunization: Protection from disease by administering vaccines that induce the body to form antibodies against infectious agents. [NIH] Inflammation: Response of the body tissues to injury; typical signs are swelling, redness, and pain. [NIH] Intravenous: Within a vein or veins. [EU] Irritants: Drugs that act locally on cutaneous or mucosal surfaces to produce inflammation; those that cause redness due to hyperemia are rubefacients; those that raise blisters are vesicants and those that penetrate sebaceous glands and cause abscesses are pustulants; tear gases and mustard gases are also irritants. [NIH] Lip: Either of the two fleshy, full-blooded margins of the mouth. [NIH] Membrane: Thin, flexible film of proteins and lipids that encloses the contents of a cell; it controls the substances that go into and come out of the cell. Also, a thin layer of tissue that covers the surface or lines the cavity of an organ. [NIH] Mucus: A thick fluid produced by the lining of some organs of the body. [NIH]
Nasal: Pertaining to the nose. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neonatologist: Doctor who specializes in treating the diseases and disorders of newborn babies. [NIH] Paradoxical: Occurring at variance with the normal rule. [EU] Pathogenesis: The cellular events and reactions that occur in the development of disease. [NIH] Pathophysiology: Altered functions in an individual or an organ due to disease. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Placenta: The special tissue that joins the mother to her fetus; it provides the fetus with oxygen, water, and nutrients (food) from the mother's blood and secretes the hormones necessary for successful pregnancy. [NIH]
Guidelines 31
Pneumonia: Inflammation of the lungs. [NIH] Pneumothorax: Accumulation of air or gas in the space between the lung and chest wall, resulting in partial or complete collapse of the lung. [NIH] Prenatal: Occurring before birth. [NIH] Progressive: Increasing in severity. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Regeneration: The natural renewal of a structure, as of a lost tissue or part. [EU]
Respiration: Process of exchanging oxygen from the air for carbon dioxide from the body; includes the mechanical process of breathing, gas exchange, and oxygen and carbon dioxide transport to and from the cells. [NIH] Respiratory: Pertaining to respiration. [EU] Retina: The inner layer of tissue at the back of the eye that is sensitive to light. [NIH] Retraction: 1. the act of drawing back; the condition of being drawn back. 2. distal movement of teeth, usually accomplished with an orthodontic appliance. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Surfactant: A fat-containing protein in the respiratory passages which reduces the surface tension of pulmonary fluids and contributes to the elastic properties of pulmonary tissue. [NIH] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Systemic: Relating to a process that affects the body generally; in this instance, the way in which blood is supplied through the aorta to all body organs except the lungs. [NIH] Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of
32 Bronchopulmonary Dysplasia
voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Vein: Vessel-carrying blood from various parts of the body to the heart. [NIH] Ventilation: The process of exchange of air between the lungs and the atmosphere leading to exchange of gases in the blood. [NIH] Ventilator: A breathing machine that is used to treat respiratory failure by promoting ventilation; also called a respirator. [NIH] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Wheezing: Breathing with a rasp or whistling sound; a sign of airway constriction or obstruction. [NIH]
Seeking Guidance 33
CHAPTER 2. SEEKING GUIDANCE Overview Some parents are comforted by the knowledge that a number of organizations dedicate their resources to helping people with bronchopulmonary dysplasia. These associations can become invaluable sources of information and advice. Many associations offer parent support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.10 In addition to support groups, your child’s physician can be a valuable source of guidance and support. In this chapter, we direct you to resources that can help you find parent organizations and medical specialists. We begin by describing how to find associations and parent groups that can help you better understand and cope with your child’s condition. The chapter ends with a discussion on how to find a doctor that is right for your child. There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information, by consulting all of them, you will have nearly exhausted all sources for parent associations. The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need.
10
34 Bronchopulmonary Dysplasia
bronchopulmonary dysplasia. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797. DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov. Simply type in “bronchopulmonary dysplasia” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “bronchopulmonary dysplasia”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “bronchopulmonary dysplasia” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with bronchopulmonary dysplasia. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific medical conditions. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “bronchopulmonary dysplasia” (or a synonym) in the search box.
Seeking Guidance 35
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms to discuss different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your child’s doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. The following Internet links may be of particular interest: ·
Medhelp.org http://www.medhelp.org/HealthTopics/Bronchopulmonary_Dysplasia. html
·
University of Wisconsin and The Center For Perinatal Care at Meriter Hospital, Madison, Wisconsin www.pediatrics.wisc.edu/childrenshosp/parents_of_preemies/referenc es.html
·
The Preemie Organization http://www.preemies.org/
Finding Doctors All parents must go through the process of selecting a physician for their children with bronchopulmonary dysplasia. While this process will vary, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:11 ·
If your child is in a managed care plan, check the plan’s list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
11
This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
36 Bronchopulmonary Dysplasia
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your child’s doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.12 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.
If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare medical conditions. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Selecting Your Doctor13 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your child’s health insurance plan and if he or she is taking new patients. If the doctor is not covered by your child’s plan, ask yourself if you are prepared to pay the extra costs. The next step is While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 13 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 12
Seeking Guidance 37
to schedule a visit with your first choice. During the first visit you will have the opportunity to evaluate your child’s doctor and to find out if your child feels comfortable with him or her.
Working with Your Child’s Doctor14 Research has shown that parents who have good relationships with their children’s doctors tend to be more satisfied with their children’s care. Here are some tips to help you and your child’s doctor become partners: ·
You know important things about your child’s symptoms and health history. Tell the doctor what you think he or she needs to know.
·
Always bring any medications your child is currently taking with you to the appointment, or you can bring a list of your child’s medications including dosage and frequency information. Talk about any allergies or reactions your child has had to medications.
·
Tell your doctor about any natural or alternative medicines your child is taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don’t, the doctor will assume that you understood everything that was said.
·
Write down your questions before the doctor’s visit. List the most important ones first to make sure that they are addressed.
·
Ask the doctor to draw pictures if you think that this will help you and your child understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Take information home. Ask for written instructions. Your child’s doctor may also have brochures and audio and videotapes on bronchopulmonary dysplasia.
By following these steps, you will enhance the relationship you and your child have with the physician.
This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
14
38 Bronchopulmonary Dysplasia
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help parents find healthcare professionals. These include:15 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
15
Clinical Trials 39
CHAPTER 3. CLINICAL TRIALS AND BRONCHOPULMONARY DYSPLASIA Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your child’s physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning bronchopulmonary dysplasia.
What Is a Clinical Trial?16 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for bronchopulmonary dysplasia is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
16
40 Bronchopulmonary Dysplasia
What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on bronchopulmonary dysplasia.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for bronchopulmonary dysplasia compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment.
How Is a Clinical Trial Conducted? Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your child’s visits. All doctors and researchers who take part in the study on bronchopulmonary dysplasia carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat your child in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on bronchopulmonary dysplasia. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may
Clinical Trials 41
receive a “sham treatment.” This treatment, like a placebo, has no effect on bronchopulmonary dysplasia and will not harm your child. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to have your child participate in a clinical trial, you will not know which group he or she will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request that your child receive the new treatment instead of the placebo or “sham” treatment. Often, you will not know until the study is over whether your child has been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the participants or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how bronchopulmonary dysplasia develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for bronchopulmonary dysplasia. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a medical condition develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a medical condition usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Your Child in a Clinical Trial? Not everyone can take part in a clinical trial for a specific medical condition. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of the condition, as well as, the age and previous treatment history of the patient. You or your child’s doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you would like your child to participate in a clinical trial, your child’s doctor must contact one of the trial’s investigators and provide details about his or her diagnosis and medical history.
42 Bronchopulmonary Dysplasia
When participating in a clinical trial, your child may be required to have a number of medical tests. Your child may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, your child may be required to receive inpatient hospital care. He or she may have to return to the medical facility for followup examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Bronchopulmonary Dysplasia The National Institutes of Health and other organizations sponsor trials on various medical conditions. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every medical condition at all times. The following lists recent trials dedicated to bronchopulmonary dysplasia.17 If the trial listed by the NIH is still recruiting, your child may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your child’s physician who can help you determine if your child might benefit from participation. ·
Inhaled NO for the Prevention of Chronic Lung Disease Condition(s): Lung Diseases; Bronchopulmonary Dysplasia Study Status: This study is currently recruiting patients. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To determine whether or not inhaled nitric oxide (NO) safely decreases the incidence of chronic lung disease in premature infants. Phase(s): Phase III Study Type: Prevention, Treatment Contact(s): Kinsella, John P. Denver, Colorado, United States; Colorado; Children's Hospital, Denver, Colorado, United States; Recruiting; John P.
17
These are listed at www.ClinicalTrials.gov.
Clinical Trials 43
Kinsella, M.D. 1-303-861-6194
[email protected]. Study chairs or principal investigators: Kinsella, John P., Study Chair; Children's Hospital Denver, Colorado, United States Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00006401 ·
Study of the Pathobiology of Bronchopulmonary Dysplasia in Newborns Condition(s): Dysplasia
Respiratory
Distress
Syndrome;
Bronchopulmonary
Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR); Children's Hospital of Philadelphia Purpose - Excerpt: Objectives: I. Create a clinical sample bank of neonates with lung disease to test hypotheses regarding the pathogenesis of bronchopulmonary dysplasia (BPD). II. Determine whether a developmental deficiency of surfactant protein B (SP-B) contributes to the occurrence of respiratory distress and BPD in these patients. III. Study metabolic abnormalities associated with inherited deficiency of SP-B in these patients. IV. Determine whether plasma nitrotyrosine levels, a marker of peroxynitrite mediated oxidant stress, are elevated in premature infants who develop BPD. V. Measure the temporal changes in critical components of the inflammatory process (cell composition, inducible nitric oxide synthase, hyaluronan (HA), receptor for HA mediated mobility, and selected cytokines) in bronchoalveolar lavage, blood, and urine samples obtained from these patients, and to correlate these changes with their clinical course. VI. Examine changes in the insulin-like growth factor axis that occur in the lungs of infants with respiratory distress syndrome (RDS) and BPD. VII. Determine the relationship between degradation of elastin and the clinical course of BPD. VIII. Determine whether the normal fall in plasma endothelin-1 concentrations after birth are delayed in infants with RDS and BPD. Study Type: Observational Contact(s): Pennsylvania; Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, 19104, United States; Recruiting; Roberta A. Ballard 215-590-1653. Study chairs or principal investigators: Roberta A. Ballard, Study Chair; Children's Hospital of Philadelphia Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00006058
44 Bronchopulmonary Dysplasia
·
Risk Factors in Bronchopulmonary Dysplasia (Newborn Lung Project) Condition(s): Bronchopulmonary Dysplasia; Lung Diseases; Respiratory Distress Syndrome Study Status: This study is no longer recruiting patients. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To investigate risk factors in bronchopulmonary dysplasia (BPD) and to elucidate the relationship between BPD, acute lung disease severity, respiration-related variables, water balance, nutrition, familial predisposition, and environmental, pregnancy, and delivery parameters. Study Type: Epidemiology Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005289
·
Antecedents of Bronchopulmonary Dysplasia Condition(s): Lung Diseases; Bronchopulmonary Dysplasia Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To identify risk factors for bronchopulmonary dysplasia/chronic pulmonary disease of prematurity and to estimate proportions of this group of disorders attributable to antenatal risk factors, perinatal events, and neonatal care procedures. Study Type: Epidemiology Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005293
·
Clinical Interventions in Respiratory Distress Syndrome and Neonatal Lung Injury - SCOR in Lung Biology and Diseases in Infants and Children Condition(s): Lung Diseases; Bronchopulmonary Dysplasia
Respiratory
Distress
Syndrome;
Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To conduct clinical interventions directed at neonatal lung disease and injury, with a focus on infants having surfactantdeficiency or inactivation as a component of pathophysiology. A major emphasis is on the surfactant-deficient Respiratory Distress Syndrome
Clinical Trials 45
(RDS) of premature infants, and on acute neonatal respiratory failure in term infants with pulmonary edema and potential surfactant inactivation (ARDS-related). Study Type: Analysis of Clinical Trials, Clinical Research Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005683 ·
Developmental Sequelae of Severe Chronic Lung Disorders Condition(s): Bronchopulmonary Dysplasia; Lung Diseases Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To determine the impact of bronchopulmonary dysplasia (BPD) on childhood development, family functioning, and parental stress. Study Type: Epidemiology Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005294
·
High Frequency Ventilation in Premature Infants (HIFI) Condition(s): Bronchopulmonary Dysplasia; Lung Diseases; Respiratory Distress Syndrome Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI); National Institute of Child Health and Human Development (NICHD) Purpose - Excerpt: To compare the efficacy and safety of high frequency ventilation (HFV) with that of standard, mechanical ventilation in premature infants of less than 2000 grams. Phase(s): Phase III Study Type: Treatment Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00000567
·
Inhaled Beclomethasone to Prevent Chronic Lung Disease Condition(s): Bronchopulmonary Dysplasia; Hyaline Membrane Disease; Lung Diseases Study Status: This study is completed.
46 Bronchopulmonary Dysplasia
Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To test if inhaled glucocorticoids, early in the course of respiratory failure in premature infants, permit normal lung growth and differentiation, thus preventing development of bronchopulmonary dysplasia. Phase(s): Phase III Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00000576 ·
Inhaled NO in Prevention of Chronic Lung Disease Condition(s): Bronchopulmonary Dysplasia; Lung Diseases Study Status: This study is not yet open for patient recruitment. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To test the hypothesis that low-dose inhaled nitric oxide administered to preterm infants who continue to require mechanical ventilation at 14 days of age will reduce the incidence of chronic lung disease. Phase(s): Phase III Study Type: Treatment, Prevention Contact(s): Ballard, Roberta Philadelphia, Pennsylvania, United States; Pennsylvania; Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States; Roberta Ballard, M.D. 1-215-590-1653
[email protected]. Study chairs or principal investigators: Ballard, Roberta, Study Chair; Children's Hospital of Philadelphia Philadelphia, Pennsylvania, United States Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00000548
·
Late Sequelae of Bronchopulmonary Dysplasia Condition(s): Lung Diseases; Bronchopulmonary Dysplasia Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To measure the cardiopulmonary function in individuals who developed bronchopulmonary dysplasia (BPD) at Stanford University Medical Center from 1964-1973 and to determine the factors associated with the presence of cardiopulmonary function abnormalities in these adolescents and young adults. Study Type: Epidemiology
Clinical Trials 47
Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005287 ·
Minimal Breathing Support and Early Steroids to Prevent Chronic Lung Disease in Extremely Premature Infants (SAVE) Condition(s): Bronchopulmonary Dysplasia; Syndrome; Infant, Premature, Diseases
Respiratory
Distress
Study Status: This study is terminated. Sponsor(s): National Institute of Child Health and Human Development (NICHD) Purpose - Excerpt: Preterm birth is a common cause of neonatal morbidity and mortality, including chronic lung disease. Extremely premature newborns who required oxygen and a ventilator for lung disease were randomized to a low tapering dose of corticosteroids vs salt water AND minimal mechanical breathing support vs routine mechanical breathing support for 10 days to test whether either intervention would reduce the risk of death or lung problems. The infants' neurodevelopment will be evaluated at 18 to 22 months corrected age. Phase(s): Phase III Study Type: Interventional Contact(s): Linda L. Wright, MD 1-301-402-0830
[email protected]. Study chairs or principal investigators: Waldemar A. Carlo, MD, Principal Investigator; University of Alabama; Ann R. Stark, MD, Principal Investigator; Harvard University Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005777 ·
Phase II Pilot Study of Early Cortisol Replacement to Prevent Bronchopulmonary Dysplasia Condition(s): Bronchopulmonary Dysplasia Study Status: This study is completed. Sponsor(s): National Center for Research Pennsylvania State University Hospital
Resources
(NCRR);
Purpose - Excerpt: Objectives: I. Estimate the efficacy of cortisol replacement therapy during the first 12 days of life for prevention of bronchopulmonary dysplasia. II. Estimate the effect of cortisol replacement therapy on the signs of acute adrenal insufficiency. III. Evaluate the effects of cortisol replacement therapy on adrenal hormone concentrations and on the ability of the adrenal gland to respond to
48 Bronchopulmonary Dysplasia
ACTH. IV. Determine the effect of this replacement therapy on markers of inflammation in lung lavage fluid and peripheral blood leukocytes. Phase(s): Phase II Study Type: Interventional Contact(s):. Study chairs or principal investigators: Kristi L. Watterberg, Study Chair; Pennsylvania State University Hospital Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00004669 ·
Phase III Randomized, Double-Blind Study of Dexamethasone vs Dexamethasone/Methylprednisolone vs Placebo for Bronchopulmonary Dysplasia Condition(s): Bronchopulmonary Dysplasia Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); University of Iowa Purpose - Excerpt: Objectives: I. Compare the efficacy of dexamethasone (DM) vs. DM/methylprednisolone treatment vs. placebo, initiated within the first month of life, on long-term pulmonary and developmental outcomes in premature infants with evolving bronchopulmonary dysplasia. II. Compare the toxicities of these treatments. III. Assess treatment effects on adrenal function. Phase(s): Phase III Study Type: Interventional Contact(s):. Study chairs or principal investigators: Richard C. Ahrens, Study Chair; University of Iowa Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00004785
·
Premature Birth and its Sequelae in Women Condition(s): Bronchopulmonary Dysplasia; Lung Diseases Study Status: This study is completed. Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To establish in children born prematurely a set of links between lung function in late infancy and lung function at school age, between lung function at school age and that in adolescence, and between lung function in adolescence and that in adulthood in order to evaluate pulmonary outcomes of neonatal therapeutic strategies and to relate these strategies to lung health in adult life.
Clinical Trials 49
Study Type: Longitudinal Human Study Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00005376 ·
Study of the Effect of Four Methods of Cardiopulmonary Resuscitation Instruction on Psychosocial Response of Parents with Infants at Risk of Sudden Death Condition(s): Pulmonary Hypertension; Bronchopulmonary Dysplasia; Respiratory Distress Syndrome Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); University of California, Los Angeles Purpose - Excerpt: Objectives: I. Describe the psychosocial response of parents and caretakers who learn cardiopulmonary resuscitation (CPR) techniques for infants at high risk for respiratory or cardiac arrest. II. Compare the effect of 4 methods of CPR instruction on psychosocial response. III. Evaluate a psychological intervention based on social support theory designed to offset the potential adverse psychological outcomes of CPR instruction. IV. Evaluate a self-paced CPR learning module using the principles of adult learning theory. V. Document the level of CPR knowledge and skill retention over time. VI. Document the frequency of CPR and its outcome following a witnessed respiratory or cardiac arrest. Study Type: Interventional Contact(s): Kathleen Dracup 310-206-3831. Study chairs or principal investigators: Kathleen Dracup, Study Chair; University of California, Los Angeles Web Site: http://clinicaltrials.gov/ct/gui/c/w1b/show/NCT00004805
Benefits and Risks18 What Are the Benefits of Participating in a Clinical Trial? If you are considering a clinical trial, it is important to realize that your child’s participation can bring many benefits: This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 18
50 Bronchopulmonary Dysplasia
·
A new treatment could be more effective than the current treatment for bronchopulmonary dysplasia. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
·
If the treatment is effective, then it may improve your child’s health.
·
Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
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People who take part in trials contribute to scientific discoveries that may help others with bronchopulmonary dysplasia. In cases where certain medical conditions run in families, your child’s participation may lead to better care or prevention for you and other family members. The Informed Consent
Once you agree to have your child take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you and your child, and your child’s rights as a patient. What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment your child receives may cause side effects that are serious enough to require medical attention.
How Is Your Child’s Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect your child can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect your child’s safety. During a clinical trial, doctors will closely watch your child to see if the treatment is working and if he or she is experiencing any side effects. All the results are carefully recorded and
Clinical Trials 51
reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. Your child will only be asked to participate in a clinical trial as a volunteer with your informed consent.
What Are Your Child’s Rights in a Clinical Trial? If your child is eligible for a clinical trial, you will be given information to help you decide whether or not you want him or her to participate. You and your child have the right to: ·
Information on all known risks and benefits of the treatments in the study.
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Know how the researchers plan to carry out the study, for how long, and where.
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Know what is expected of your child.
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Know any costs involved for you or your child’s insurance provider.
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Know before any of your child’s medical or personal information is shared with other researchers involved in the clinical trial.
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Talk openly with doctors and ask any questions.
After your child joins a clinical trial, you and your child have the right to: ·
Leave the study at any time. Participation is strictly voluntary.
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Receive any new information about the new treatment.
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Continue to ask questions and get answers.
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Maintain your child’s privacy. Your child’s name will not appear in any reports based on the study.
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Know whether your child participated in the treatment group or the control group (once the study has been completed). What about Costs?
In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your child’s insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing your child to participation in
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the trial. If your child has health insurance, find out exactly what it will cover. If your child does not have health insurance, or if your child’s insurance policy will not cover care, talk to the clinic staff about other options for covering the costs. What Questions Should You Ask before Your Child Participates? Questions you should ask when deciding whether or not to enroll your child in a clinical trial include the following: ·
What is the purpose of the clinical trial?
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What are the standard treatments for bronchopulmonary dysplasia? Why do researchers think the new treatment may be better? What is likely to happen to my child with or without the new treatment?
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What tests and treatments will my child need? Will my child need surgery? Medication? Hospitalization?
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How long will the treatment last? How often will my child have to come back for follow-up exams?
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What are the treatment’s possible benefits to my child’s condition? What are the short- and long-term risks? What are the possible side effects?
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Will the treatment be uncomfortable? Will it make my child sick? If so, for how long?
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How will my child’s health be monitored?
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Where will my child need to go for the clinical trial?
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How much will it cost to participate in the study? What costs are covered by the study? How much will my child’s health insurance cover?
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Who will be in charge of my child’s care?
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Will taking part in the study affect my child’s daily life?
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How does my child feel about taking part in a clinical trial? Will other family members benefit from my child’s contributions to new medical knowledge?
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Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide the public and physicians with current information about clinical research across the broadest number of medical conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “bronchopulmonary dysplasia” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
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For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
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For heart, lung and blood trials, visit the Web page of the National Heart, Lung and Blood Institute: http://www.nhlbi.nih.gov/studies/index.htm
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com):
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·
A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
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A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
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The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
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The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
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Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
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Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
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Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: ACTH: Adrenocorticotropic hormone. [EU] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Antecedent: Existing or occurring before in time or order often with consequential effects. [EU] Beclomethasone: An anti-inflammatory, synthetic glucocorticoid. It is used topically as an anti-inflammatory agent and in aerosol form for the treatment
Clinical Trials 55
of asthma. [NIH] Cardiac: Pertaining to the heart. [EU] Cardiopulmonary: Pertaining to the heart and lungs. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Efficacy: The extent to which a specific intervention, procedure, regimen, or service produces a beneficial result under ideal conditions. Ideally, the determination of efficacy is based on the results of a randomized control trial. [NIH] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Lavage: To wash the interior of a body organ. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Resuscitation: The restoration to life or consciousness of one apparently dead; it includes such measures as artificial respiration and cardiac massage. [EU]
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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on bronchopulmonary dysplasia. All too often, parents who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on bronchopulmonary dysplasia. In Part II, as in Part I, our objective is not to interpret the latest advances on bronchopulmonary dysplasia or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with bronchopulmonary dysplasia is suggested.
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CHAPTER 4. DYSPLASIA
STUDIES
ON
BRONCHOPULMONARY
Overview Every year, academic studies are published on bronchopulmonary dysplasia or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on bronchopulmonary dysplasia. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on bronchopulmonary dysplasia and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and bronchopulmonary dysplasia, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where
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“You may refine your search by.” Select the dates and language you prefer, and the format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “bronchopulmonary dysplasia” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Hearing and Neurodevelopmental Outcome in Survivors of Persistent Pulmonary Hypertension of the Newborn Source: Pediatrics. 90(3): 392-396. September 1992. Summary: This article reports on a study that assessed neurodevelopmental outcome and hearing in infants who survived persistent pulmonary hypertension in the neonatal period, for which they were managed conservatively. A total of 27 of 34 infants with this diagnosis underwent neurological, intelligence, and audiologic testing between 10 months and 6 years of age. Children who were younger than 1 year of age at the initial hearing test were retested after they reached 2 years of age. The average IQ score was within the normal range (mean = 96.23). None of the children had sensorineural hearing loss. Severe neurologic abnormalities were seen in four children, three of whom had been severely asphyxiated at birth. Mild neurologic abnormalities were observed in five children. Two infants had bronchopulmonary dysplasia because they required supplemental oxygen for 29 and 66 days respectively, and had abnormal chest roentgenograms. The authors conclude that this study suggests that conservative management without induced alkalosis or respiratory paralysis is accompanied by no sensorineural hearing loss and a good neurologic outcome. 6 tables. 33 references. (AA-M).
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Smoking and Alcohol Use During Pregnancy Affects Preterm Infants' Docosahexaenoic Acid (DHA) Status Source: Acta Paediatrica. 88(7):757-762, July 1999. Summary: Researchers investigated the effect of alcohol consumption and smoking during pregnancy on the fatty acid composition of infants. They enrolled 40 very-low-birthweight (VLBW) infants, weighing between 750 and 1,500 grams, who were hospitalized and ventilated for respiratory distress syndrome (RDS) at Tygerberg Hospital, Tygerberg, South Africa. The infants were part of a randomized prospective study
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evaluating the effects of daily vitamin A supplementation on reducing the severity of bronchopulmonary dysplasia for VLBW infants being ventilated for RDS. Maternal and infant demographic information, maternal medical and obstetrical history, and infant clinical status were recorded before enrollment in the study. Information on maternal smoking habits (none, less than 10 or 10 or more cigarettes per day (cigarette/day)) and frequency of alcohol consumption (none, occasional, moderate, or severe) were recorded. Occasional was defined as drinking alcohol at social functions, moderate as regular consumption of alcohol during the week and over weekends, and severe as drinking alcohol daily. Blood samples were collected from the infants at birth (fetal blood) and on postnatal days (PND's) 1, 7, 14, 21, and 28. Maternal blood samples were also obtained at birth. Samples collected at birth and on PND 14 and 28 were analyzed for fatty acids by gas liquid chromatography (GLC). Erythrocytes were harvested from the samples and erythrocyte membrane (EMB) preparations were made. The composition of total fatty acids in the EMB's were determined by GLC. Most of the mothers were of mixed race (90 percent), and 50 percent earned more than 200 United States dollars per month. Approximately 42.5 percent of the mothers consumed alcohol during pregnancy. Of these, 58.8 percent drank only occasionally. The prevalence of smoking was 50 percent, of whom 75 percent smoked fewer than 10 cigarettes/day. The prevalence of mothers who smoked and/or consumed alcohol during pregnancy was 62.5 percent, of whom 30 percent reported both smoking and drinking during pregnancy. EMB eicosatrienoic acid (ETA) concentrations were significantly lower in fetal blood of infants whose mothers smoked during pregnancy than in those whose mothers had not smoked. During the postnatal period, there was a significantly smaller decrease in ETA concentrations in infants whose mothers smoked during pregnancy. EMB docosahexaenoic acid (DHA) concentrations tended to be higher at birth in infants whose mothers consumed alcohol during pregnancy than those whose mothers did not. EMB DHA levels at birth of infants whose mothers both smoked and drank alcohol during pregnancy were significantly higher than those of infants whose mothers did neither. The DHA levels tended to decrease postnatally in infants whose mothers both smoked and drank during pregnancy compared to those of infants whose mothers abstained. Researchers concluded that higher EMB DHA concentrations have been found in infants whose mothers smoked and/or consumed alcohol during pregnancy compared with those whose mothers did neither. The clinical implications of this finding are unknown. 4 tables, 30 references.
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Federally-Funded Research on Bronchopulmonary Dysplasia The U.S. Government supports a variety of research studies relating to bronchopulmonary dysplasia and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.19 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to bronchopulmonary dysplasia and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore bronchopulmonary dysplasia and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for bronchopulmonary dysplasia: ·
Project Title: Dysplasia
Dexamethasone
Function
In
Bronchopulmonary
Principal Investigator & Institution: Vancurova, Ivana; ; Long Island Jewish Medical Center 270-05 76Th Ave New Hyde Park, Ny 11040 Timing: Fiscal Year 2001; Project Start 1-MAY-2001; Project End 0-APR2003 Summary: Bronchopulmonary dysplasia (BPD), also known as neonatal chronic lung disease, is one of the most serious cardiopulmonary disorders in newborns, and remains a top priority for research in neonatology today. Although dexamethasone (DEX) is effective in reducing lung inflammation associated with BPD, and weaning newborns from mechanical ventilation, it produces an unacceptably high rate of serious short and long term side effects. Despite the widespread use of DEX in BPD, there has been no previous work addressing the molecular mechanisms of this therapy. Our long-term objective is to elucidate the molecular mechanisms underlying DEX function and 19 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
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cytokine expression in neonatal BPD. The neutrophil plays a central role in the pathogenesis of BPD. Our recent results demonstrate that DEX inhibits activation of a transcription factor known to be critical for inflammatory cytokine production in human neutrophils, nuclear factorkappaB (NF-kappaB), and this is accompanied by increased cellular levels of the NF-kappaB inhibitor, IkappaBalpha. This proposal focuses on the specific mechanisms through which DEX suppresses activation of NF-kappaB in newborn neutrophils. The specific aims of this proposal are the following. 1. To test the hypothesis that the mechanism of the DEX up-regulation of IkappaBalpha in newborn neutrophils consists of (I) inhibition of degradation of 1kappaBalpha, and/or (II) increased rate of IkappaBalpha synthesis. 2. To test the hypothesis that a new inhibitory protein synthesis is required for the DEX inhibition of NF-kappaB activation. 3. To investigate whether DEX inhibits NF-kappaB activation by direct protein-protein interactions between the activated glucocorticoid receptor (GR) and the NF-kappaB subunits in newborn neutrophils as well. Effective, selective and safer therapies are urgently needed for treatment of BPD, and other neutrophil-mediated pulmonary disorders. The development of such therapies will be achieved by a better understanding of the molecular mechanisms underlying the antiinflammatory action of glucocorticoids in neutrophils. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Efficacy of Inhaled Beclomethasone in Preventing Bronchopulmonary Dysplasia Principal Investigator & Institution: Bernstein, Susan; ; Medical College of Wisconsin 8701 Watertown Plank Rd Milwaukee, Wi 53226 Timing: Fiscal Year 2000 Summary: This abstract is not available. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: IGF Axis in Lung Development and Bronchopulmonary Dysplasia Principal Investigator & Institution: Cohen, Pinchas; ; Children's Hospital of Philadelphia 34Th St and Civic Ctr Blvd Philadelphia, Pa 19104 Timing: Fiscal Year 2000 Summary: Bronchopulmonary dysplasia (BPD) is a major public health problem, but it remains a poorly understood pathological phenomenon. Possible involvement of growth factors and cytokines in early lung development and in athe pathogenesis of BPD has been suggested, but has not been thoroughly studied. The insulin like growth factors (IGFs)
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have been demonstrated to be critical regulators of cellular growth in other systems and are likely to play a key role in the lung. The IGF axis is comprised of a complex network of molecular involved in cellular proliferation and differentiation. This axis includes the two IGF ligands, two receptor with differing cellular effects, and a family of six IGF binding proteins (IGFBPs) which modulate IGF availability to IGF receptors (IGF-R) and also have independent effects on cell function and growth. The IGFBPs, in turn, are regulated by a group of IGFBP proteases which cleave the IGFBPs into lower affinity fragments. Our hypotheses are that the developing human fetal lung constitutes an environment in which IGFs, IGF-R, IGFBPs, and IGFBP proteases are locally expressed and play an important role in proliferation, differentiation and maturation. In addition, we believe that specific mediators which affect the mitogenesis of lung cells act via modulation of the IGF axis which, i n turn, directly controls cellular growth. Furthermore, we predict that as a result of oxygen toxicity, inflammation, and altered cytokine balance, the IGF axis in the lungs of infants with BPD is altered, leading to abnormal proliferation and dis- organization of lung tissues. We hope to show that perinatal and postnatal intervention with TRH and steroids will prevent the IGF-related effects of inflammation in the premature lung. In preliminary experiments, using various protein and mRNA detection techniques, as well as histo- morphological localization approaches, we have been able to demonstrate a clear ontogeny of IGFs and IGFBPs in the lung. Furthermore, examination of lung specimens from patients with BPD demonstrated dramatic changes in the expression of IGF axis components, including IGFs, IGF-R, and IGFBPs. Our specific aims for this application are: 1) to fully characterize and define the presence and the role of the IGF axis ina the developing lung and in cultured lung cell; 2) to investigate the mechanisms by which certain mediators (such as oxygen radicals, interleukins, TGFbeta and steroids), regulate lung cell proliferation via IGF axis modulation (such as altering the IGFBP/protease balance) in lung issues and cells; 3) to compare the presence of IGF-related molecules, in normal fetal and newborn lungs and in lungs from individuals with BPD, as well as in BAL fluids from these individuals, and to detect abnormalities which could be related to the disease process; and 4) to study, in a lung organ culture model, the effects of IGFs and related molecules on the regulation of proliferation and gene expression. We expect to define the role of the iGF system in the physiology of lung development and in the pathogenesis of BPD. We believe that these studies will help us understand the dis-regulated growth of stromal cells in the lungs of patients with BPD and allow us to improve our therapeutic approaches to this disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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·
Project Title: Lung Elastin in Bronchopulmonary Dysplasia Principal Investigator & Institution: Pierce, Richard A.; Research Associate Professor; Barnes-Jewish Hospital 216 S Kingshighway Blvd St. Louis, Mo 63110 Timing: Fiscal Year 2000; Project Start 1-SEP-1999; Project End 1-AUG2002 Summary: The focus of this proposal is to characterize mechanisms controlling elastin synthesis and turnover during the development of bronchopulmonary dysplasia (BPD) resulting from ventilation of the premature lung. Elastin confers the requisite property of elastic recoil to such lung structures as alveoli and alveolar ducts, bronchioles, and blood vessels, and thus is essential for lung function. We have previously demonstrated abnormal elastic fiber deposition in an experimental model of BPD, and others have demonstrated increased elastolytic activity in the BPD lung. Still, the root causes of elastic fiber abnormalities in BPD are not known. We hypothesize that mesenchymal cells of the premature lung respond to the strain of mechanical ventilation by increasing the expression and deposition of elastic extracellular matrix components out of proportion to what is required for alveolarization. Exposure to hyperoxia may result in the production and release of elastases such as neutrophil elastase or matrix metalloproteinases that damage elastic fibers, as well as cytokines or growth factors that alter extracellular matrix gene expression by lung fibroblasts. These events result in the excess deposition of disordered elastic fibers at sites of failed development of new alveolar walls. The accumulation of disorganized elastic fibers at these sites may limit the ability to recover from injury. To determine the causes of abnormal elastic fiber deposition during the development of BPD, we propose to study the expression of elastin, fibrillins 1 and 2, and lysyl oxidase, all required for normal elastic fiber synthesis, and to characterize the elastases present in the injured lung. Our experimental approaches will include quantitative analysis of elastic fiber-related and elastase mRNA expression by RNAse protection assays, as well as localization of expression by in situ hybridization and immunohistochemical analyses. The molecular mechanisms regulating tropoelastin expression during normal baboon lung development and the development of BPD will be determined by assessing changes in tropoelastin gene transcription, steady-state mRNA levels, and protein synthesis, expression and activity of elastases in the BPD lung will be assessed by a combination of substrate zymography, immunohistochemistry, and in situ hybridization. Determining the effects of interventive treatments on the expression of elastic fiber-related genes and the elaboration of elastases will test the hypothesis that
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treatments which prevent BPD will also restore normal patterns of elastic fiber-related gene expression and elastic fiber deposition. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Nitric Oxide Effects on Bronchopulmonary Dysplasia Principal Investigator & Institution: Bland, Richard D.; Fields Professor of Pediatrics; Children's Hospital of Philadelphia 34Th St and Civic Ctr Blvd Philadelphia, Pa 19104 Timing: Fiscal Year 2001; Project Start 1-SEP-1996; Project End 1-JUL-2006 Summary: (Applicant's Abstract) Bronchopulmonary dysplasia (BPD) often complicates prolonged mechanical ventilation after premature birth. Defining the mechanisms that cause BPD and developing a safe, effective treatment strategy are the ultimate objectives of this project. To study the pathogenesis of BPD and to test various therapeutic interventions, we developed a preterm lamb model that mimics the clinical and pathological findings of this disease. The underlying hypothesis is that early postnatal inflammation of the immature lung exposed to prolonged, repetitive stretch with 02-enriched gas leads to oxidant and protease induced lung injury that can be inhibited or prevented by early and continuous postnatal delivery of inhaled nitric oxide (iNO), the response to which may be enhanced by antenatal steroid treatment. The proposal has 3 specific aims: (i) to compare immediate vs delayed (7d) postnatal delivery of continuous, low-dose iNO (and the relevant control, no iNO) in chronically ventilated preterm lambs; (ii) to determine if antenatal steroid treatment will modify the response to immediate or delayed iNO; and (iii) to determine if iNO will inhibit lung inflammation and thereby facilitate postnatal adaptation of the pulmonary circulation and respiratory tract, leading to improved respiratory gas exchange. This project complements the clinical trial of iNO in preterm infants with respiratory failure. Serial specimens of bronchial secretions, lung lavage fluid and lung lymph will allow assessment of inflammation in evolving BPD. The research plan includes physiological, biochemical, histological and molecular techniques to define mechanisms underlying abnormalities in the lung circulation (persistent elevation of vascular resistance, edema from increased vascular filtration pressure, loss of the pulmonary vasodilator response to iNO, increased arterial smooth muscle, reduced numbers of microvessels and less capillary surface density, decreased expression of endothelial nitric oxide synthase and soluble guanylate cyclase); respiratory tract (increased expiratory resistance, proliferation of bronchiolar smooth muscle, reduced numbers of alveoli); and lung interstitium (increased lung tropoelastin expression and disordered elastin accumulation) that
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characterize the lamb model of BPD. Collaborative studies with other SCOR projects that focus on surfactant proteins and function (I), vascular endothelial growth factor and its receptors (II), inflammatory mediators (III), and mitogens that influence smooth muscle proliferation and connective tissue elements (IV) will provide new insight on mechanisms of lung dysfunction and dysplasia in BPD and the impact of iNO and antenatal steroids on these abnormalities. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Pathobiology of Bronchopulmonary Dysplasia Principal Investigator & Institution: Ballard, Roberta; ; Children's Hospital of Philadelphia 34Th St and Civic Ctr Blvd Philadelphia, Pa 19104 Timing: Fiscal Year 2000 Summary: The overall hypothesis of this study is that bronchopulmonary dysplasia (BPD) is the result of injury and abnormal repair to an immature lung. We hypothesize that factors involved in the pathogenesis of BPD include abnormalities (congenital or acquired) of the surfactant proteins, oxidative stress, inflammation and cytokine production leading to pulmonary fibrosis and hypertension with vascular remodeling. Specifically, we propose that transforming growth factor b (TGFb) is a key mediator of inflammation and fibrosis in the premature lung through inhibition of surfactant production and stimulation of matrix constituents. AIM 1: To create a Clinical Data Base and Tissue Bank from premature neonates with lung disease, some of whom will progress to the development of BPD. The broad clinical database, along with biostatistical support, will allow basic science investigators in the SCOR project (Pathobiology of Lung Development and BPD) to test for associations between biochemical parameters and pathogenesis of BPD, as well as possible therapeutic interventions. AIM 2: To determine whether the level of developmental deficiencies of surfactant proteins (SP-A, -B and -C) contribute to the occurrence of BPD. AIM 3: To measure the temporal changes in critical components of the inflammatory process (inflammatory cell composition, inducible nitric oxide synthase (iNOS), plasma nitrotyrosine levels, hyaluronan (HA), and Receptor for HAmediated motility (RHAMM), and selected cytokines and vasoactive factors) in tracheal aspirate (TA), blood, and urine samples obtained from intubated infants with lung disease, and to correlate these changes with their clinical course. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Steroid Treatment in Premature Infants at risk for Bronchopulmonary Dysplasia Principal Investigator & Institution: Walther, Frans; ; Harbor-UCLA Research & Educ Inst at Harbor-Ucla Medical Center Torrance, Ca 90502 Timing: Fiscal Year 2000 Summary: To see if early administration of low dose corticorsteroids in preterm infants with severe respiratory distress syndrome and at risk for bronchopulmonary dysplasia will result in improvement in lung function and will prevent or minimize lung injury associated with mechanical ventilation and oxyuben toxicity without significant side effects. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Chronic Lung Injury After Premature Birth Principal Investigator & Institution: Albertine, Kurt H.; Professor; Pediatrics; University of Utah 110 Park Bldg Salt Lake City, Ut 84112 Timing: Fiscal Year 2001; Project Start 9-SEP-2000; Project End 1-AUG2004 Summary: (Adapted from the Investigator's Abstract): Bronchopulmonary dysplasia is a complication of prolonged mechanical ventilation after premature birth. To study the pathophysiology of this disease, the investigator has developed an animal model of BPD, following premature delivery of lambs, and 3 weeks of mechanical ventilation. Utilizing this model, physiologic, biochemical, histologic, and molecular techniques will be used to determine (1) if incomplete lung development is essential for the vascular and structural abnormalities of the pulmonary circulation that occur in chronic lung disease, (2) if inhaled nitric oxide will enhance the NO-cGMP cascade and facilitate postnatal regression of vascular smooth muscle in these lambs, and (3) if decreased availability of L-arginine and/or increased activity of cGMPspecific PDE contributes to the sustained elevation of PVR and the abnormal postnatal regression of vascular smooth muscle in these premature lambs. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Cytokine and Extracellular Matrix in BPD Principal Investigator & Institution: Aghai, Zubair H.; ; Weill Medical College of Cornell Univ of Cornell University New York, Ny 10021 Timing: Fiscal Year 2000; Project Start 1-DEC-1989; Project End 0-NOV2003
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Summary: We postulated that the development of bronchopulmonary dysplasia (BPD) is mediated by reactive changes in the gene expression of specific cytokines and consequently, by changes in the levels or the bioactivity of these cytokines. These changes markedly affect the composition of the resident and nonresident cells and of the extracellular matrix within the neonatal lung. In this study we will investigate the effect of mechanical ventilation and oxygen therapy on the immature lung of premature babies as reflected by the response of cytokines (MIF, GM-CSF, TNF-a, interleukin 8, TGF-B) and extracellularmatrix elements (PIINP, PICP, C-IV, Lam P1) and to establish the relation of this coordinated response to the development of bronchopulmonary dysplasia. We will also study the efffect of exogenous dexamethasone and of endogenous aldosterone on this coordinated response by cytokines and matrix. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Endothelial/Neutrophil Adhesion Molecules in BPD Principal Investigator & Institution: Ballabh, Praveen; ; Weill Medical College of Cornell Univ of Cornell University New York, Ny 10021 Timing: Fiscal Year 2000; Project Start 1-DEC-1989; Project End 0-NOV2003 Summary: We proposed that there is increased expression of neutrophil and endothelial adhesion molecules CR3, L-selectin, soluble E-selectin, soluble L-selectin and soluble ICAM-1 in bronchopulmonary dysplasia (BPD), which may be early markers of this condition. Furthermore, we postulated that therapeutic use of steroid will inhibit production of these adhesion molecules and may also downregulate lymphocytic function. We also hypothesized that neutrophil burst activity of circulating neutrophils is increased in BPD and this may explain the lung injury in these infants. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Maturation of Airway Relaxant Responses Principal Investigator & Institution: Martin, Richard J.; Professor; Pediatrics; Case Western Reserve University 10900 Euclid Ave Cleveland, Oh 44106 Timing: Fiscal Year 2001; Project Start 3-MAY-1996; Project End 1-DEC2005 Summary: Preterm infants exposed to supplemental oxygen are predisposed to the development of bronchopulmonary dysplasia [BPD] which is associated with increased airway resistance and subsequent
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airway hyperreactivity. The current proposal is to extend our earlier studies on regulation of airways by characterizing maturation of airway relaxant responses during normal development and in response to hyperoxic exposure. We will initially test the hypothesis that there is upregulation of airway smooth muscle relaxant mechanisms during early postnatal life, secondary to increased production of nitric oxide and relaxant prostaglandins [PGE2 and PGI2] from airway epithelium. Our preliminary data demonstrate that administration of substance P [SP] and cholinergic stimulation elicit a relaxant response of preconstricted tracheal smooth muscle which declines with postnatal maturation, is mediated by release of endogenous NO and PGE2, and is impaired after hyperoxic exposure. We will therefore additionally test the hypothesis that hyperoxic stress impairs NO and PGE2-mediated airway smooth muscle relaxation secondary to impaired NO and PG-mediated signaling pathways in airway smooth muscle. Physiologic relaxant responses of preconstricted airways will be characterized in maturing rat pups under normoxic and hyperoxic conditions. These findings will be correlated with expression and activity of nitric oxide synthase (NOS) and cyclooxygenase (COX) isoforms in airway epithelium. In airway smooth muscle we will determine developmental and hyperoxia-induced changes in prostaglandin (PGE2) receptor subtypes, Gi protein expression and cAMP production. Maturational and hyperoxia-induced effects on NO/cGMP signaling pathways including expression and activation of cGMP dependent protein kinase (PKG) will be assayed. Physiologic responses will then be correlated with levels of free intracellular Ca2++ and myosin light chain dephosphorylation in airway smooth muscle in normoxic and hyperoxic tissues. Characterization of the mechanisms underlying deficient airway smooth muscle relaxation will help to elucidate the pathologic mechanisms underlying airway hyperreactivity secondary to hyperoxia-induced lung injury, as in preterm infants who develop bronchopulmonary dysplasia. This should lead to the design of new therapeutic approaches for such disorders. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Nitric Oxide Synthases in Lung Development and Bronchopu Principal Investigator & Institution: Shaul, Philip W.; Professor; Pediatrics; University of Texas Sw Med Ctr/Dallas Southwestern Medical Ctr/Dallas Dallas, Tx 75390 Timing: Fiscal Year 2000; Project Start 1-SEP-1999; Project End 1-AUG2003
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Summary: The signaling molecule nitric oxide (NO) is critically involved in airway and vascular function in the developing lung. NO is produced by three isoforms of NO synthase (NOS), neuronal NOS (nNOS), endothelial NOS (eNOS), and inducible NOS (iNOS). Our preliminary work in normal baboon fetuses indicates that all three isoforms are expressed in airway epithelium, and that nNOS and eNOS are upregulated during late gestation to optimize NO production in the perinatal period. Bronchopulmonary dysplasia (BPD) is an inflammatory condition which disrupts the development of the preterm human lung, and it is characterized by airway and pulmonary vascular dysfunction. Our initial studies in the baboon BPD model indicate that lung NO production and lung nNOS and eNOS expression are markedly attenuated during the genesis of BPD, and that NO replacement by inhalation (iNO) results in a sustained improvement in oxygenation index. The overall objective of this proposal is to investigate the role of alterations in NOS expression in the pathophysiology of BPD in the baboon model. The primary hypothesis is that pulmonary nNOS and eNOS expression are downregulated during the development of BPD, leading to diminished NO production and abnormal airway and vascular structure and function. The secondary hypothesis is that iNO reverses these abnormalities. Aim 1 is to define the normal ontogeny and changes in NOS protein and mRNA expression in early BPD, using approaches including laser capture microdissection to evaluate NOS mRNA levels in specific cell types harvested from frozen sections. Aim 2 is to determine the role of each NOS isoform in airway and vascular function in studies of NOS antagonism in intact animals. Aim 3 is to reveal the changes in exhaled NO levels with fetal development and BPD, as well as the contribution of each NOS isoform to exhaled NO. Aim 4 is to determine the effects of iNO on airway and vascular function, on the pulmonary course of early BPD, and on lung histology. Aim 5 is to determine the mechanisms underlying constitutive nNOS and eNOS gene expression in cultured baboon airway epithelium, and the role of cytokines in their downregulation. The results obtained will increase our knowledge of the role of NO in normally successful postnatal pulmonary adaptation and in the pathophysiology of BPD, thereby possibly leading to novel therapies for this devastating disorder. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Oral Conditions and Pregnancy--Neonatal Outcomes Principal Investigator & Institution: Auten, Richard L.; ; University of North Carolina Chapel Hill Chapel Hill, Nc 27514 Timing: Fiscal Year 2000
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Summary: This supplemental application extends the evaluation of oral inflammation and infection, effects on pregnancy to the potential impact on premature newborns and the leading complications of prematurity, lung and brain damage. The general hypothesis is that subclinical infection, possibly originating in periodontal disease, affects the inflammatory and immune responses in women, placing them at higher risk for preterm labor and delivery. Pro-inflammatory cytokines, associated with periodontal disease and intrauterine infection, have been implicated in the initiation of preterm labor. Our proposed studies will assess how these maternal processes affect the inflammatory cascade in the premature low birth eight infant and the risk for inflammatory complication of prematurity. Prenatal infection and inflammation are associated with brain injury in premature newborns, in particular intraventricular hemorrhage and periventricular leukomalacia. Inflammatory cytokines are found in the tracheal secretions of premature newborns who later develop bronchopulmonary dysplasia. Necrotizing enterocolitis is another serious life-threatening complication of prematurity associated with elevations in pro-inflammatory cytokines. Genetic polymorphisms encoding IL-1beta and TNFalpha are associated with increased cytokine expression and may predispose to an exaggerated inflammatory response. We will measure pro-inflammatory cytokines in pregnant women and compare them to those in their premature newborns. Cytokines will be correlated with the inflammatory complications of prematurity: bronchopulmonary dysplasia, intraventricular hemorrhage/periventricular leukomalacia, and necrotizing enterocolitis, using logistic regression analysis. Polymorphisms will be identified and correlated with these inflammatory complications with the abundance of cytokine protein and mRNA in tracheal aspirates cells and in blood. We will test whether a panel of mediators identified at risk with high sensitivity and specificity. Our long-term aim is to develop markers that identify newborns at highest risk and provide the basis for future therapy to prevent these complications of prematurity. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Scor in Pathobiology of Lung Development Principal Investigator & Institution: Bernfield, Merton R.; Clements Smith Professor of Pediatrics; Children's Hospital (Boston) 300 Longwood Ave Boston, Ma 02115 Timing: Fiscal Year 2000; Project Start 1-DEC-1996; Project End 0-NOV2001
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Summary: This proposal combines basic and clinical research approaches to the development, injury and repair of the perinatal lung that underlie bronchopulmonary dysplasia (BPD) and pulmonary hypertension of the newborn (PPHN), the major causes of chronic lung disease (CLD) of infancy. Project 1 employs a mouse model of glucocorticoid deficiency based on targeted deletion of the corticotrophin-releasing hormone (CRH) gene. The role of glucocorticoids in normal and dysplastic fetal lung development will be analyzed by identifying cellular targets of steroid action, characterizing the role of cell-cell interactions and paracrine factors in downstream signaling, and determining whether lung-derived CRH plays a role in lung maturation. Project 2 analyzes the role of cell surface heparan sulfate proteoglycans, syndecans, their shedding into the extracellular spaces, and their inducers in modifying the action of heparin-binding effectors involved in the developmental response to injury. Project 3 explores the possibility that heparin- binding EGF-like growth factor (HB-EGF), a potent mitogen for smooth muscle (SM) cells, fibroblasts, and epithelial cells, is involved in the response of the lung to injury. Mechanisms that regulate HB-EGF synthesis and bioactivity in normal and abnormal lungs, and HB-EGF antagonists that might control abnormal lung cell proliferation will be studies. Projects 4 and 5 will function in concert to analyze the cellular and molecular mechanisms that the lung uses to control pulmonary vascular SM cell contractility and growth. These responses to injury become deregulated during the pathogenesis of PPHN. Project 4 focuses on gene regulation by hypoxia, and the interaction of endothelial-derived vasoconstrictors and vasodilators in a rat model of hypoxia-induced pulmonary remodeling as well as in infants with PPHN. Project 5 is based on the finding that changes in cell-extracellular matrix interactions in response to these endothelial-derived factors can modulate pulmonary vascular SM cell by altering integrin-dependent signaling mechanisms. These signals, elicited by ECM and soluble vasoagonists, may be blocked by integrin antagonists, possible inhibitors of hypoxia-induced pulmonary remodeling in the rat model. Each project will have a close collaboration with the Clinical Core which will (i) formulate testable clinical hypotheses based on insights from the laboratory studies, (ii) provide samples and data from patients with BPD and PPHN, and (iii) generate statistical analyses and study designs. Project 7, the Administrative Core, will orchestrate these interdisciplinary efforts, manage the distribution of funds and efforts and create a SCOR research community. Our integrated search approach to the critical problem of CLD of infancy will facilitate development of new methods for its prevention and therapy. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Scor in Pathobiology of Lung Development Principal Investigator & Institution: Ballard, Philip L.; Professor; Children's Hospital of Philadelphia 34Th St and Civic Ctr Blvd Philadelphia, Pa 19104 Timing: Fiscal Year 2000; Project Start 1-SEP-1996; Project End 1-AUG2001 Summary: This SCOR Program proposes basic and clinical studies to address events in early lung development and mechanisms involved in pathogenesis and prevention of bronchopulmonary dysplasia (BPD). This disease continues to be a major cause of morbidity and mortality in premature infants even in the era of surfactant replacement. The overall hypothesis of our SCOR program is that BPD is the result of injury and abnormal repair ina the immature lung, and that basic studies related to processes of normal lung growth and differentiation will provide new knowledge related to the pathogenesis of BPD that can be translated into improved therapeutic strategies. The SCOR involves 20 investigators from the School of Medicine, Dental Medicine and Veterinary Medicine at the University of Pennsylvania and consists of four basic science projects, each with a clinical component, one clinical project and three cores. The Director of the SCOR is an experienced investigator in lung development and the participating Responsible and Co-Investigators include senior investigators with expertise in neonatal lung disease, clinical trials, pulmonary surfactant, matrix proteins, immunology, gene expression and cell ultrastructure, plus well-trained and productive younger researchers. The goals of the basic projects are to investigate subcellular and molecular events regulating differentiation of lung epithelial cells, cell replication and composition of interstitial matrix in the developing fetal lung and in BPD. Each of the projects will use cultured fetal lung and lung bud experimental models for their studies. The clinical project will determine benefits, risks and long-term infant outcome in an ongoing trial of prenatal thyrotropin releasing hormone (TRH) plus corticosteroid therapy for prevention of newborn lung disease, and will continue a multi-center collaboration for further study of BPD. The large database and clinical samples (blood, lung lavage and lung tissue) collected from infants in these trials will be utilized by all investigators in the SCOR program for studies of the pathogenesis of BPD and mechanisms of hormonal therapy. A Tissue Culture Core will prepare and provide cultures of lung tissue and Vector Core, located within the Institute for Human Gene Therapy, will prepare recombinant viral vectors for the basic studies. The program is highly interactive with collaborations between most projects and a direct relationship between each of the basic projects and the clinical project. The SCOR represents a
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multidisciplinary, highly integrated and thematic research program tightly focused on the investigation of key subcellular and molecular events of lung development related to pathogenesis and prevention of BPD. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central20 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).21 Access to this growing archive of e-journals is free and unrestricted.22 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “bronchopulmonary dysplasia” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for bronchopulmonary dysplasia in the PubMed Central database: ·
Antenatal infection/inflammation and postnatal lung maturation and injury by Alan H. Jobe and Machiko Ikegami; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=59566
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Current status of long term ventilation of children in the United Kingdom: questionnaire survey by E Jardine, M O'Toole, J Y Paton, and C Wallis; 1999 January 30 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=27711
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The adverse neuro-developmental effects of postnatal steroids in the preterm infant: a systematic review of RCTs by Keith J. Barrington; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=29104
Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 21 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 22 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 20
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The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.23 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with bronchopulmonary dysplasia, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “bronchopulmonary dysplasia” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “bronchopulmonary dysplasia” (hyperlink leads to an article summary): ·
Vitamin A supplementation and bronchopulmonary dysplasia-revisited. Author(s): Shenai JP, Rush MG, Stahlman MT, Chytil F. Source: The Journal of Pediatrics. 1992 September; 121(3): 399-401. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1517914&dopt=Abstract
Vocabulary Builder Aberrant: Wandering or deviating from the usual or normal course. [EU] Acuity: Clarity or clearness, especially of the vision. [EU] Adenocarcinoma: organization. [NIH]
A malignant epithelial tumor with a glandular
Alkalosis: A pathologic condition resulting from accumulation of base, or from loss of acid without comparable loss of base in the body fluids, and PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
23
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characterized by decrease in hydrogen ion concentration (increase in pH). [EU]
Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chromosomal: Pertaining to chromosomes. [EU] Colitis: Inflammation of the colon. [EU] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Colposcopy: The examination, therapy or surgery of the cervix and vagina by means of a specially designed endoscope introduced vaginally. [NIH] Confounding: Extraneous variables resulting in outcome effects that obscure or exaggerate the "true" effect of an intervention. [NIH] Conization: The excision of a cone of tissue, especially of the cervix uteri. [NIH]
Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Crowding: Behavior with respect to an excessive number of individuals, human or animal, in relation to available space. [NIH] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with living bodies and involved in their functional activity. [EU] Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Erythrocytes: Red blood cells. Mature erythrocytes are non-nucleated, biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of
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photons. [EU] Extracellular: Outside a cell or cells. [EU] Fenretinide: A synthetic retinoid that is used orally as a chemopreventive against prostate cancer and in women at risk of developing contralateral breast cancer. It is also effective as an antineoplastic agent. [NIH] Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] Gastroscopy: Endoscopic examination, therapy or surgery of the interior of the stomach. [NIH] Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hyperoxia: An abnormal increase in the amount of oxygen in the tissues and organs. [NIH] Immunohistochemistry: Histochemical localization of immunoreactive substances using labeled antibodies as reagents. [NIH] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Isotretinoin: A topical dermatologic agent that is used in the treatment of acne vulgaris and several other skin diseases. The drug has teratogenic and other adverse effects. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lipoxygenase: An enzyme of the oxidoreductase class that catalyzes reactions between linoleate and other fatty acids and oxygen to form hydroperoxy-fatty acid derivatives. Related enzymes in this class include the arachidonate lipoxygenases, arachidonate 5-lipoxygenase, arachidonate 12lipoxygenase, and arachidonate 15-lipoxygenase. ec 1.13.11.12. [NIH] Membranes: Thin layers of tissue which cover parts of the body, separate adjacent cavities, or connect adjacent structures. [NIH] Metaplasia: The change in the type of adult cells in a tissue to a form which
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is not formal for that tissue. [EU] Microscopy: The application of microscope magnification to the study of materials that cannot be properly seen by the unaided eye. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Mucosa: A mucous membrane, or tunica mucosa. [EU] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Papillomavirus: A genus of papovaviridae causing proliferation of the epithelium, which may lead to malignancy. A wide range of animals are infected including humans, chimpanzees, cattle, rabbits, dogs, and horses. [NIH]
Paraffin: A mixture of solid hydrocarbons obtained from petroleum. It has a wide range of uses including as a stiffening agent in ointments, as a lubricant, and as a topical anti-inflammatory. It is also commonly used as an embedding material in histology. [NIH] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Phosphorylation: The introduction of a phosphoryl group into a compound through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Postnatal: Occurring after birth, with reference to the newborn. [EU] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Prevalence: The number of events, e.g., instances of a given disease or other condition, in a given population at a designated time. When used without qualification, the term usually refers to the situation at specific point in time (point prevalence). Prevalence is a number, not a rate. [NIH] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Retinoids: Derivatives of vitamin A. Used clinically in the treatment of severe cystic acne, psoriasis, and other disorders of keratinization. Their possible use in the prophylaxis and treatment of cancer is being actively explored. [NIH]
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Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Thoracic: Pertaining to or affecting the chest. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
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CHAPTER 5. BOOKS ON BRONCHOPULMONARY DYSPLASIA Overview This chapter provides bibliographic book references relating to bronchopulmonary dysplasia. You have many options to locate books on bronchopulmonary dysplasia. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some parents, however, prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on bronchopulmonary dysplasia include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “bronchopulmonary dysplasia” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on bronchopulmonary dysplasia:
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Feeding and Swallowing Disorders in Infancy: Assessment and Management Source: San Antonio, TX: Communication Skill Builders. 1992. 496 p. Contact: Available from Communication Skill Builders. Customer Service, 555 Academic Court, San Antonio, TX 78204-2498. Voice (800) 211-8378; TTY (800) 723-1318; Fax (800) 232-1223. PRICE: $66.00 plus shipping and handling. ISBN: 0884505308. Summary: This book describes infant feeding evaluation and therapy in a medical context. The pertinent pediatric entities (prematurity and bronchopulmonary dysplasia, clefts and other malformations, various neurologic impairments) and evaluation methods (videofluoroscopy, endoscopy, and esophageal pH recording and manometry) are reviewed. The authors include descriptions of feeding impairments and their specific therapy. They provide examples of individual infants, detailed problem-driven models, and treatment strategies. The authors also include information on the roles different health professionals, including speech therapists, primary physicians, and otolaryngologists, can play in the care and management of swallowing disorders in infants. Each chapter includes references; a subject index concludes the volume. (AA-M).
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to bronchopulmonary dysplasia (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·
Bronchopulmonary Dysplasia (Aspen Seminars on Pediatric Disease) by Eduardo Bancalari, J. Thomas Stocker (Editor) (1989); ISBN: 0891166815; http://www.amazon.com/exec/obidos/ASIN/0891166815/icongroupin terna
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Bronchopulmonary Dysplasia (Contemporary Issues in Fetal and Neonatal Medicine, Vol 4) by T. Allen Merritt, et al; ISBN: 0865420475; http://www.amazon.com/exec/obidos/ASIN/0865420475/icongroupin terna
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The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “bronchopulmonary dysplasia” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:24 ·
Bronchopulmonary diseases and related disorders. Editors: Cranston W. Holman [and] Carl Muschenheim. Author: Holman, Cranston W., 1907-; Year: 1972; Hagerstown, Md., Medical Dept., Harper & Row [c1972]; ISBN: 0061418072 http://www.amazon.com/exec/obidos/ASIN/0061418072/icongroupin terna
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Bronchopulmonary diseases; basic aspects, diagnosis and treatment, by 142 authors. Author: Naclerio, Emil A; Year: 1957; [New York] HoeberHarper [c1957]
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Bronchopulmonary dysplasia and related chronic respiratory disorders: report of the Ninetieth Ross Conference on Pediatric Research. Author: Ross Conference on Pediatric Research (90th: 1985: Carefree, Ariz.); Year: 1986; Columbus, Ohio (625 Cleveland Ave., Columbus 43216): Ross Laboratories, c1986
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Bronchopulmonary dysplasia. Author: edited by T. Allen Merritt, William H. Northway, Jr., Bruce R. Boynton; Year: 1988; Boston: Blackwell Scientific Publications; Chicago, Ill.: Distributors, USA and Canada, Year Book Medical Publishers, c1988; ISBN: 0865420475 http://www.amazon.com/exec/obidos/ASIN/0865420475/icongroupin terna
In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
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Bronchopulmonary dysplasia. Author: edited by Eduardo Bancalari, J. Thomas Stocker; Year: 1988; Washington: Hemisphere Pub. Corp., c1988; ISBN: 0891166815 http://www.amazon.com/exec/obidos/ASIN/0891166815/icongroupin terna
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Congenital bronchopulmonary malformations. Author: Susan R. Luck, Marleta Reynolds, John G. Raffensperger; Year: 1986; Chicago: Year Book Medical Publishers, c1986
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Report of Workshop on Bronchopulmonary Dysplasia: December 4-6, 1978. Author: issued by Division of Lung Diseases, National Heart, Lung, and Blood Institute; Year: 1979; [Bethesda, Md.]: U. S. Dept. of Health, Education, and Welfare, Public Health Service, National Institutes of Health, 1979
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Respiratory disorders in the newborn. Author: guest editor, W. Alan Hodson; Year: 1984; New York: Thieme-Stratton, c1984
Chapters on Bronchopulmonary Dysplasia Frequently, bronchopulmonary dysplasia will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with bronchopulmonary dysplasia, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and bronchopulmonary dysplasia using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “bronchopulmonary dysplasia” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on bronchopulmonary dysplasia: ·
Special Diagnostic Categories Source: in Wolf, L.S. and Glass, R.P. Feeding and Swallowing Disorders in Infancy: Assessment and Management. Tucson, AZ: Communication Skill Builders. 1992. p. 297-398. Contact: Available from Communication Skill Builders. 3830 East Bellvue, P.O. Box 42050, Tucson, AZ 85733. (602) 323-7500. PRICE: $59.00 plus shipping and handling. ISBN: 0884505308.
Books 85
Summary: This chapter, from a book about the assessment and management of feeding and swallowing disorders in infancy, focuses on specific diagnoses to highlight feeding problems and treatment techniques that are unique to specific diagnoses. With this background, the feeding specialist will be able to quickly rule in or out particular features of the initial diagnosis when assessing a feeding problem, or move on to alternative solutions. Topics covered include the premature infant; bronchopulmonary dysplasia; gastroesophageal reflux; congenital heart disease; oral-facial anomalies; and tracheoesophageal fistula and esophageal atresia. Topics covered in the oral-facial anomalies section include cleft lip, cleft palate, cleft lip and palate together, micrognathia, and the Pierre-Robin malformation sequence. Other topics covered in this section include considerations in determining oral feeding programs; and feeding modifications and devices. Twenty-eight references refer specifically to the section on oral-facial anomalies. 186 references.
General Home References In addition to references for bronchopulmonary dysplasia, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Anatomica : The Complete Home Medical Reference by Peter Forrestal (Editor); Hardcover (2000), Book Sales; ISBN: 1740480309; http://www.amazon.com/exec/obidos/ASIN/1740480309/icongroupinterna · The Breathing Disorders Sourcebook by Francis V. Adams, M.D.; Paperback - 240 pages (November 1998), McGraw Hill - NTC; ISBN: 073730006X; http://www.amazon.com/exec/obidos/ASIN/073730006X/icongroupinterna · The HarperCollins Illustrated Medical Dictionary : The Complete Home Medical Dictionary by Ida G. Dox, et al; Paperback - 656 pages 4th edition (2001), Harper Resource; ISBN: 0062736469; http://www.amazon.com/exec/obidos/ASIN/0062736469/icongroupinterna · The Merck Manual of Medical Information: Home Edition (Merck Manual of Medical Information Home Edition (Trade Paper) by Robert Berkow (Editor), Mark H. Beers, M.D. (Editor); Paperback - 1536 pages (2000), Pocket Books; ISBN: 0671027263; http://www.amazon.com/exec/obidos/ASIN/0671027263/icongroupinterna
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· Stedman’s Cardiovascular & Pulmonary Words: Includes Respiratory; Paperback - 888 pages, 3rd edition (June 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0781730562; http://www.amazon.com/exec/obidos/ASIN/0781730562/icongroupinterna
Vocabulary Builder Aspergillosis: Infections with fungi of the genus aspergillus. [NIH] Bronchitis: Inflammation of one or more bronchi. [EU] Bronchoscope: A long, narrow tube with a light at the end that is used by the doctor for direct observation of the airways, as well as for suction of tissue and other materials. [NIH] Cardiomyopathy: A disease of the heart muscle (myocardium). [NIH] Contraceptive: conception. [EU]
An agent that diminishes the likelihood of or prevents
Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Gynaecological: Pertaining to gynaecology. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH] Reflux: A backward or return flow. [EU] Surgical: Of, pertaining to, or correctable by surgery. [EU]
Multimedia 87
CHAPTER 6. MULTIMEDIA ON BRONCHOPULMONARY DYSPLASIA Overview Information on bronchopulmonary dysplasia can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on bronchopulmonary dysplasia. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Bibliography: Multimedia on Bronchopulmonary Dysplasia The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in bronchopulmonary dysplasia (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on bronchopulmonary dysplasia. For more information, follow the hyperlink indicated: ·
Baby Beashore. Source: Clair[e] Aloan, Marlis Amato; Year: 1985; Format: Electronic resource; Edwardsville, KS: Medi-Sim, c1985
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·
Bronchopulmonary segments; part 1, anatomy and bronchoscopy. Source: Pfizer Laboratories; produced by Campus Film Production; Year: 1955; Format: Motion picture; New York: Pfizer, c1955
·
New look at bronchopulmonary dysplasia. Source: the University of Texas Medical School at Houston; produced by UT/TV, Houston; Year: 1991; Format: Videorecording; [Houston, Tex.: UT/TV], c1991
·
Use of bronchography in the diagnosis of various bronchopulmonary diseases. Source: A. J. Christoforidis; Year: 1973; Format: Slide; [Columbus, Ohio: Christoforidis; Chicago: for sale by Micro X-Ray Recorder, Inc., Medical Film Slide Division, 1973?]
Vocabulary Builder Arthroplasty: Surgical reconstruction of a joint to relieve pain or restore motion. [NIH] Bronchography: Radiography of the bronchial tree after injection of a contrast medium. [NIH] Bronchoscopy: A technique for visualizing the interior of bronchi and instilling or removing fluid or tissue samples by passing a lighted tube (bronchoscope) through the nose or mouth into the bronchi. [NIH] Caudal: Denoting a position more toward the cauda, or tail, than some specified point of reference; same as inferior, in human anatomy. [EU] Dislocation: The displacement of any part, more especially of a bone. Called also luxation. [EU] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Osteotomy: The surgical cutting of a bone. [EU]
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CHAPTER 7. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help children with bronchopulmonary dysplasia. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common medical conditions, the National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Heart, Lung, and Blood Institute (NHLBI); guidelines available at http://www.nhlbi.nih.gov/guidelines/index.htm
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The NHLBI recently recommended the following guidelines and references to physicians treating patients with lung conditions: Asthma General: ·
National Asthma Education and Prevention Program Slide Sets: http://hin.nhlbi.nih.gov/naepp_slds/menu.htm
·
Action Against Asthma: A Strategic Plan for the Department of Health and Human Services: http://aspe.hhs.gov/sp/asthma
·
Asthma Management Model System (Web Site): http://www.nhlbisupport.com/asthma/index.html
·
Asthma Management in Minority Children: http://www.nhlbi.nih.gov/health/prof/lung/asthma/ast_chil.htm
·
AsthmaMemo: http://www.nhlbi.nih.gov/health/prof/lung/asthma/asth_mem.htm
·
Data Fact Sheet: Asthma Statistics: http://www.nhlbi.nih.gov/health/prof/lung/asthma/asthstat.htm
·
Diagnosing and Managing Asthma in the Elderly: http://www.nhlbi.nih.gov/health/prof/lung/asthma/as_elder.htm
·
Guidelines for the Diagnosis and Management of Asthma: NAEPP Expert Panel Report 2: http://www.nhlbi.nih.gov/guidelines/asthma/asthgdln.htm
·
NAEPP Task Force on the Cost Effectiveness, Quality of Care, and Financing of Asthma Care: http://www.nhlbi.nih.gov/health/prof/lung/asthma/ast_cost.htm
·
Nurses: Partners in Asthma Care: http://www.nhlbi.nih.gov/health/prof/lung/asthma/nurs_gde.htm
·
Practical Guide for the Diagnosis and Management of Asthma: http://www.nhlbi.nih.gov/health/prof/lung/asthma/practgde.htm
·
Report of the Working Group on Asthma and Pregnancy: http://www.nhlbi.nih.gov/health/prof/lung/asthma/astpreg.txt
·
The Role of the Pharmacist in Improving Asthma Care: http://www.nhlbi.nih.gov/health/prof/lung/asthma/asmapmcy.htm
·
World Asthma Day 2001 (May 3, 2001): http://www.nhlbi.nih.gov/health/prof/lung/asthma/wad_2/index.htm
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Schools/child care centers: ·
NAEPP Resolution on Asthma Management at School: http://www.nhlbi.nih.gov/health/public/lung/asthma/resolut.htm
·
Asthma and Physical Activity in the School: http://www.nhlbi.nih.gov/health/public/lung/asthma/phy_asth.htm
·
Asthma Awareness Curriculum for the Elementary Classroom: http://www.nhlbi.nih.gov/health/prof/lung/asthma/school/index.htm
·
How Asthma-Friendly Is Your School? (¿Su escuela tiene en cuenta a los niños con asma?): http://www.nhlbi.nih.gov/health/public/lung/asthma/friendhi.htm
·
How Asthma-Friendly Is Your Child-Care Setting? (¿Su guardería infantil tiene en cuenta a los niños con asma?): http://www.nhlbi.nih.gov/health/public/lung/asthma/child_ca.htm
·
School Asthma Education Slide Set: http://hin.nhlbi.nih.gov/naepp_slds/menu.htm
See also: ·
Asthma Clinical Research Network (ACRN): http://www.acrn.org/25
·
Global Initiative for Asthma: http://www.nhlbi.nih.gov/health/prof/lung/gina.htm
·
National Asthma Education and Prevention Program: http://www.nhlbi.nih.gov/about/naepp/index.htm National Emphysema Treatment Trial (NETT)
·
News Release: NHLBI-Funded Emphysema Study Finds Certain Patients at High Risk for Death Following Lung Surgery, August 14, 2001: http://www.nhlbi.nih.gov/new/press/01-08-14.htm
·
News Release: NHLBI/HCFA Lung Volume Reduction Surgery Study Participants Announced, December 20, 1996: http://www.nhlbi.nih.gov/health/prof/lung/nett/lvrspr.htm
·
Background and Study Information: http://www.nhlbi.nih.gov/health/prof/lung/nett/lvrsweb.htm
Please note: This link, which goes outside the NHLBI Web site, will open a new browser window; to return to this document, either close the new window, or toggle back (ALT-TAB for Windows users, Apple-TAB for Macintosh users).
25
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·
Participating Centers: http://www.nhlbi.nih.gov/health/prof/lung/nett/lvrsctr.htm Other Pulmonary Information
Global Initiative for Chronic Obstructive Lung Disease (GOLD): ·
COPD Guideline Tool for Palm OS: http://hin.nhlbi.nih.gov/copd.htm
·
Workshop Report: http://www.nhlbi.nih.gov/health/prof/lung/gold.htm
·
Tuberculosis Academic Awards: http://www.nhlbi.nih.gov/funding/training/tbaa/index.htm
·
Acute Respiratory Distress Syndrome Clinical Network (ARDSNet): http://hedwig.mgh.harvard.edu/ardsnet/
·
Pulmonary Immunobiology and Inflammation in Pulmonary Diseases NHLBI, Workshop Summary: http://www.nhlbi.nih.gov/meetings/workshops/pul_inflam.htm
·
Pharmacological Therapy for Idiopathic Pulmonary Fibrosis: Past, Present, and Future, NHLBI Workshop Summary: http://www.nhlbi.nih.gov/meetings/workshops/ipf-sum.htm
·
Nurses: Help Your Patients Stop Smoking: http://www.nhlbi.nih.gov/health/prof/lung/other/nurssmok.txt
See also: ·
List of Publications: http://www.nhlbi.nih.gov/health/pubs/pub_prof.htm
·
Information Center: http://www.nhlbi.nih.gov/health/infoctr/index.htm
·
Lung Information for Patients/Public: http://www.nhlbi.nih.gov/health/public/lung/index.htm
NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.26 Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html).
26
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Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:27 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
·
HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
·
NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
·
Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
·
Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
·
Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
·
Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
·
Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
·
Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
27
See http://www.nlm.nih.gov/databases/databases.html.
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·
Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
·
MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
·
Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
·
Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat bronchopulmonary dysplasia, the following are particularly noteworthy.
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and bronchopulmonary dysplasia using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “bronchopulmonary dysplasia” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with bronchopulmonary dysplasia. The following is a sample result: ·
Early cortisol replacement to prevent bronchopulmonary dysplasia: Pilot study Source: Arlington, VA: National Center for Education in Maternal and Child Health. 2000. 4 pp. Contact: Available from National Maternal and Child Health Clearinghouse, 2070 Chain Bridge Road, Suite 450, Vienna, VA 221822536. Telephone: (703) 356-1964 or (888) 434-4MCH / fax: (703) 821-2098
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/ e-mail:
[email protected] / Web site: http://www.nmchc.org. Available from the Web site at no charge. Summary: This document announces the Research Roundtable describing research in a pilot study on early cortisol replacement to prevent bronchopulmonary dysplasia in premature infants. The findings will be presented at a Research Roundtable sponsored by the Maternal and Child Health Bureau. The Web site offers print materials including an overview of the study, presenter contact information, an HTML version of the Reactor's remarks and a list of resources and references. The audiovisual portion of the program includes slideshows, Powerpoint presentations, a quicktime version of the reactor's presentation, and an audio recording of the session. [Funded by the Maternal and Child Health Bureau]. ·
Early cortisol deficiency and bronchopulmonary dysplasia Source: Arlington, VA: National Center for Education in Maternal and Child Health. 1995. 8 pp. Contact: Available from Librarian, National Center for Education in Maternal and Child Health, 2000 15th Street, North, Suite 701, Arlington, VA 22201-2617. Telephone: (703) 524-7802 / fax: (703) 524-9335 / e-mail:
[email protected] / Web site: http://www.ncemch.org. Photocopy available at no charge: also available from the Web site at no charge. Summary: This report summarizes a Maternal and Child Health Bureau funded project presented at a seminar October 18, 1995. This project focuses on cortisol production in low birthweight premature infants and the relationship of cortisol concentrations and bronchopulmonary dysplasia. The report ends with reaction to the project and a list of publications. [Funded by the Maternal and Child Health Bureau].
·
Psychosocial sequelae of bronchopulmonary dysplasia and very low birthweight Source: Arlington, VA: National Center for Education in Maternal and Child Health. 1995. 6 pp. Contact: Available from Librarian, National Center for Education in Maternal and Child Health, 2000 15th Street, North, Suite 701, Arlington, VA 22201-2617. Telephone: (703) 524-7802 / fax: (703) 524-9335 / e-mail:
[email protected] / Web site: http://www.ncemch.org. Photocopy available at no charge; also available from the Web site at no charge. Summary: This report summarizes a Maternal and Child Health Bureau funded project presented at a seminar June 27, 1995. The study focuses on the developmental and family sequelae of bronchopulmonary dysplasia
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(BPD) and the medical and social complications of prematurity and very low birthweight. It addresses whether infants with BPD would exhibit more developmental problems, using standard measures of growth, intellect, motor, and language development; whether parents would show higher degrees of depressive symptoms and stress; and whether infants would show more deviant and maladaptive feeding behavior. The report ends with reaction to the project and a list of publications. [Funded by the Maternal and Child Health Bureau].
The NLM Gateway28 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.29 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, parents and the public.30 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “bronchopulmonary dysplasia” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category.
Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 30 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 28 29
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Results Summary Category Items Found Journal Articles 2324 Books / Periodicals / Audio Visual 11 Consumer Health 7 Meeting Abstracts 4 Other Collections 11 Total 2357
HSTAT31 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.32 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as Simply search by AHRQ’s Put Prevention Into Practice.33 “bronchopulmonary dysplasia” (or synonyms) at the following Web site: http://text.nlm.nih.gov.
Coffee Break: Tutorials for Biologists34 Some parents may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 33 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 34 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 31 32
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may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.35 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.36 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. Access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
·
MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.
·
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language
The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 36 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process. 35
Physician Guidelines and Databases 99
generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html.
The Genome Project and Bronchopulmonary Dysplasia With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and parents want to know about how human genes relate to bronchopulmonary dysplasia. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.
Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).37 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “bronchopulmonary dysplasia” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for bronchopulmonary dysplasia: ·
FG Syndrome Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?305450
Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, ncbi creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
37
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·
Immune Defect due to Absence of Thymus Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?242700
·
Prostaglandin-endoperoxide Synthase 2; Ptgs2 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?600262 Genes and Disease (NCBI - Map)
The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. To access the Genes and Disease database, go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Cancer: Uncontrolled cell division. Examples: Breast And Ovarian Cancer, Burkitt lymphoma, chronic myeloid leukemia, colon cancer, lung cancer, malignant melanoma, multiple endocrine neoplasia, neurofibromatosis, p53 tumor suppressor, pancreatic cancer, prostate cancer, Ras oncogene, RB: retinoblastoma, von Hippel-Lindau syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Cancer.html
·
Metabolism: Food and energy. Examples: Adreno-leukodystrophy, Atherosclerosis, Best disease, Gaucher disease, Glucose galactose malabsorption, Gyrate atrophy, Juvenile onset diabetes, Obesity, Paroxysmal nocturnal hemoglobinuria, Phenylketonuria, Refsum disease, Tangier disease, Tay-Sachs disease. Web site: http://www.ncbi.nlm.nih.gov/disease/Metabolism.html
·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome,
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Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html ·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
·
Transporters: Pumps and channels. Examples: Cystic Fibrosis, deafness, diastrophic dysplasia, Hemophilia A, long-QT syndrome, Menkes syndrome, Pendred syndrome, polycystic kidney disease, sickle cell anemia, Wilson’s disease, Zellweger syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Transporters.html
Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
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Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
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Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
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Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
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Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
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PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
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OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
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Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
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Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
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ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
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3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
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NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=genom e, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “bronchopulmonary dysplasia” (or synonyms) and click “Go.”
Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database38 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At the following Web site you can also search synonyms alphabetically: http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html. You can search the MCA/MR database by keywords at this Web site: http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database39 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 39 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 38
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Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “bronchopulmonary dysplasia” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in bronchopulmonary dysplasia (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Atlas of Pediatric Physical Diagnosis by Basil J. Zitelli, Holly W. Davis (Editor); Hardcover, 3rd edition (March 1997), Mosby-Year Book; ISBN: 0815199309; http://www.amazon.com/exec/obidos/ASIN/0815199309/icongroupinterna · Atlas of Lung Pathology; Hardcover, Cd-Rom edition (July 1997), Lippincott Williams & Wilkins Publishers; ISBN: 0412112116; http://www.amazon.com/exec/obidos/ASIN/0412112116/icongroupinterna · Differential Diagnosis in Pathology: Pulmonary Disorders (Differential Diagnosis in Pathology) by Anthony A. Gal, M.D., Michael N. Koss, M.D.; Hardcover (August 1997), Lippincott, Williams & Wilkins; ISBN: 0683303015; http://www.amazon.com/exec/obidos/ASIN/0683303015/icongroupinterna
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· The 5-Minute Pediatric Consult by M. William Schwartz (Editor); Hardcover - 1050 pages, 2nd edition (January 15, 2000), Lippincott, Williams & Wilkins; ISBN: 0683307444; http://www.amazon.com/exec/obidos/ASIN/0683307444/icongroupinterna · Foundations of Respiratory Care by Kenneth A. Wyka, William F. Clark, Paul J. Mathews; Hardcover - 1032 pages, 1st edition (January 15, 2002), Delmar Learning; ISBN: 0766808939; http://www.amazon.com/exec/obidos/ASIN/0766808939/icongroupinterna · Lung Disorders Sourcebook by Dawn D. Matthews; Hardcover, 1st edition (March 2002), Omnigraphics, Inc.; ISBN: 0780803396; http://www.amazon.com/exec/obidos/ASIN/0780803396/icongroupinterna · Nelson Textbook of Pediatrics by Richard E. Behrman (Editor), et al; Hardcover - 2414 pages, 16th edition (January 15, 2000), W B Saunders Co; ISBN: 0721677673; http://www.amazon.com/exec/obidos/ASIN/0721677673/icongroupinterna · Pulmonary Diseases and Disorders Companion Handbook by Alfred P. Fishman; Paperback, 3rd edition (April 15, 2002), McGraw-Hill; ISBN: 0070220026; http://www.amazon.com/exec/obidos/ASIN/0070220026/icongroupinterna · Textbook of Respiratory Medicine (Two-Volume Set) by John F. Murray, Jay A. Nadel; Hardcover - 2562 pages, 3rd edition (May 15, 2000), W B Saunders Co; ISBN: 0721677118; http://www.amazon.com/exec/obidos/ASIN/0721677118/icongroupinterna
Dissertations 105
CHAPTER 8. DISSERTATIONS ON BRONCHOPULMONARY DYSPLASIA Overview University researchers are active in studying almost all known medical conditions. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to bronchopulmonary dysplasia. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Bronchopulmonary Dysplasia ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to bronchopulmonary dysplasia. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with bronchopulmonary dysplasia:
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·
Coping and Psychological Distress in Mothers of Very Low Birth Weight Infants by Eisengart, Sheri Pam; Phd from Case Western Reserve University, 2001, 192 pages http://wwwlib.umi.com/dissertations/fullcit/3027289
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The Ventilator-dependent Child: Impact upon the Family System by Ostroff-welsh, Gia, Phd from Temple University, 1993, 126 pages http://wwwlib.umi.com/dissertations/fullcit/9408811
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to bronchopulmonary dysplasia is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
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PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics relating to bronchopulmonary dysplasia and related conditions.
Researching Your Child’s Medications 109
APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to treat bronchopulmonary dysplasia. While a number of hard copy or CD-Rom resources are available to parents and physicians for research purposes, a more flexible method is to use Internetbased databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your child’s medications. You may also want to research medications that your child is currently taking for other conditions as they may interact with medications for bronchopulmonary dysplasia. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of bronchopulmonary dysplasia. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.
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Your Child’s Medications: The Basics40 The Agency for Health Care Research and Quality has published extremely useful guidelines on the medication aspects of bronchopulmonary dysplasia. Giving your child medication can involve many steps and decisions each day. The AHCRQ recommends that parents take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions, your child may be spared from possible problems. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your child’s treatment, including diet changes, exercise, and medicines.
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Ask about the risks and benefits of each medicine or other treatment your child might receive.
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Ask how often you or your child’s doctor will check for side effects from a given medication.
Do not hesitate to tell the doctor about preferences you have for your child’s medicines. You may want your child to have a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost. Or, you may want the medicine the doctor believes will work the best. Sharing your concerns will help the doctor select the best treatment for your child. Do not be afraid to “bother” the doctor with your questions about medications for bronchopulmonary dysplasia. You can also talk to a nurse or a pharmacist. They can help you better understand your child’s treatment plan. Talking over your child’s options with someone you trust can help you make better choices. Specifically, ask the doctor the following: ·
The name of the medicine and what it is supposed to do.
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How and when to give your child the medicine, how much, and for how long.
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What food, drinks, other medicines, or activities your child should avoid while taking the medicine.
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What side effects your child may experience, and what to do if they occur.
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If there are any refills, and how often.
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About any terms or directions you do not understand.
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What to do if your child misses a dose.
40
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
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·
If there is written information you can take home (most pharmacies have information sheets on prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell the doctor about all the medicines your child is currently taking (not just those for bronchopulmonary dysplasia). This includes prescription medicines and the medicines that you buy over the counter. When talking to the doctor, you may wish to prepare a list of medicines your child is currently taking including why and in what forms. Be sure to include the following information for each: ·
Name of medicine
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Reason taken
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Dosage
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Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
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Diet pills
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Vitamins
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Cold medicine
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Aspirin or other pain, headache, or fever medicine
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Cough medicine
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Allergy relief medicine
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Antacids
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Sleeping pills
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Others (include names)
Learning More about Your Child’s Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications the doctor has recommended for bronchopulmonary dysplasia. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located
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in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.41 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided.
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your child’s doctor’s office.
Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters’ database as associated with bronchopulmonary dysplasia (including those with contraindications):42 ·
Dexamethasone http://www.reutershealth.com/atoz/html/Dexamethasone.htm
·
Palivizumab http://www.reutershealth.com/atoz/html/Palivizumab.htm
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm. 42 Adapted from A to Z Drug Facts by Facts and Comparisons. 41
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Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides information on prescribing and drug interactions. Information can be obtained at http://www.genrx.com/Mosby/PhyGenRx/group.html. Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.
Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for children with bronchopulmonary dysplasia--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat bronchopulmonary dysplasia or potentially create deleterious side effects in patients with bronchopulmonary dysplasia. You should ask the physician about any contraindications, especially as these might apply to other medications that your child may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause your child to experience an unexpected side effect. Drug interactions may make medications less
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effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to your child. Be sure to read the label every time you give your child a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your child’s health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes avaiable. This is why it’s especially important to read the label every time you give your child a medication. When the doctor prescribes a new drug, discuss all overthe-counter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals your child takes. Ask your pharmacist for the package insert for each drug prescribed. The package insert provides more information about potential drug interactions.
A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for bronchopulmonary dysplasia. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt your child. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with bronchopulmonary dysplasia. The FDA warns to watch out for43: ·
Secret formulas (real scientists share what they know)
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Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)
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Quick, painless, or guaranteed cures
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If it sounds too good to be true, it probably isn’t true.
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
43
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If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Delmar’s Respiratory Care Drug Reference by Fred Hill; Paperback - 575 pages, 1st edition (January 15, 1999), Delmar Learning; ISBN: 0827390661; http://www.amazon.com/exec/obidos/ASIN/0827390661/icongroupinterna
·
Mosby’s Respiratory Care Drug Reference by Joseph L., Jr. Rau; Paperback - 352 pages, 1st edition (January 15, 1997), Mosby-Year Book; ISBN: 0815184565; http://www.amazon.com/exec/obidos/ASIN/0815184565/icongroupinterna
·
Pharmacology in Respiratory Care by Stuart R. Levine, Henry Hitner, Arthur J. McLaughlin, Jr.; Hardcover - 386 pages (May 11, 2001), Appleton & Lange; ISBN: 0071347275; http://www.amazon.com/exec/obidos/ASIN/0071347275/icongroupinterna
·
Respiratory Care Drug Reference by Arthur McLaughlin; Paperback - 383 pages, 2 edition (March 1997), Unknown; ISBN: 0834207885; http://www.amazon.com/exec/obidos/ASIN/0834207885/icongroupinterna
Researching Alternative Medicine 117
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your child’s doctor or your friends have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to bronchopulmonary dysplasia. Finally, at the conclusion of this chapter, we will provide a list of readings on bronchopulmonary dysplasia from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.
What Is CAM?44 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also 44
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.
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known as “preventive,” which means that the practitioner educates and treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?45 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each.
Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are 45
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
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practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and illness, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that a medical condition is the manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than treatment for the condition itself. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
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Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.
Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat medical conditions with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory conditions.
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may
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have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.
Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
Can Alternatives Affect My Child’s Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your child’s medical treatment. It becomes all the more important to speak with the doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National
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Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for everyone.46
Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your child’s healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires that the practitioner know of all conventional and alternative therapies that your child is taking. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Bronchopulmonary Dysplasia Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for bronchopulmonary dysplasia. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required. National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow parents to search for articles that specifically relate to bronchopulmonary dysplasia and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “bronchopulmonary dysplasia” (or synonyms) into the search box. Click “Go.” The following references provide
46
Adapted from http://www.4woman.gov/faq/alternative.htm.
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information on particular aspects of complementary and alternative medicine (CAM) that are related to bronchopulmonary dysplasia: ·
Bronchopulmonary dysplasia--what is it? Author(s): Meschan I, Hines WB, Scharyj M. Source: Southern Medical Journal. 1973 April; 66(4): 417-26. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4575232&dopt=Abstract
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Clinical trial of vitamin A supplementation in infants susceptible to bronchopulmonary dysplasia. Author(s): Shenai JP, Kennedy KA, Chytil F, Stahlman MT. Source: The Journal of Pediatrics. 1987 August; 111(2): 269-77. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3302193&dopt=Abstract
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Early high dose antioxidant vitamins do not prevent bronchopulmonary dysplasia in premature baboons exposed to prolonged hyperoxia: a pilot study. Author(s): Berger TM, Frei B, Rifai N, Avery ME, Suh J, Yoder BA, Coalson JJ. Source: Pediatric Research. 1998 June; 43(6): 719-26. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9621979&dopt=Abstract
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Effect of long-chain n-3 fatty acid supplementation on visual acuity and growth of preterm infants with and without bronchopulmonary dysplasia. Author(s): Carlson SE, Werkman SH, Tolley EA. Source: The American Journal of Clinical Nutrition. 1996 May; 63(5): 68797. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8615350&dopt=Abstract
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Evolution of respiratory mechanics in preterm babies after surfactant administration in the neonatal period. Author(s): Parmigiani S, Panza C, Bevilacqua G. Source: Acta Biomed Ateneo Parmense. 1997; 68 Suppl 1: 65-73. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10021719&dopt=Abstract
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·
Failure of supplementation with vitamin E to prevent bronchopulmonary dysplasia in infants less than 1,500 g birth weight. Author(s): Watts JL, Milner R, Zipursky A, Paes B, Ling E, Gill G, Fletcher B, Rand C. Source: The European Respiratory Journal : Official Journal of the European Society for Clinical Respiratory Physiology. 1991 February; 4(2): 188-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2044736&dopt=Abstract
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Inositol supplementation in premature infants with respiratory distress syndrome. Author(s): Hallman M, Bry K, Hoppu K, Lappi M, Pohjavuori M. Source: The New England Journal of Medicine. 1992 May 7; 326(19): 12339. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1560798&dopt=Abstract
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Inositol supplementation in respiratory distress syndrome. Author(s): Hallman M, Pohjavuori M, Bry K. Source: Lung. 1990; 168 Suppl: 877-82. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2117207&dopt=Abstract
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Inositol supplementation in respiratory distress syndrome: relationship between serum concentration, renal excretion, and lung effluent phospholipids. Author(s): Hallman M, Arjomaa P, Hoppu K. Source: The Journal of Pediatrics. 1987 April; 110(4): 604-10. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3559811&dopt=Abstract
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Observations of a support group for parents of children with severe bronchopulmonary dysplasia. Author(s): Baley JE, Hancharik SM, Rivers A. Source: Journal of Developmental and Behavioral Pediatrics : Jdbp. 1988 February; 9(1): 19-24. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3343351&dopt=Abstract
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Trial of vitamin A supplementation in very low birth weight infants at risk for bronchopulmonary dysplasia.
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Author(s): Pearson E, Bose C, Snidow T, Ransom L, Young T, Bose G, Stiles A. Source: The Journal of Pediatrics. 1992 September; 121(3): 420-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1517921&dopt=Abstract ·
Vitamin A supplementation and bronchopulmonary dysplasia-revisited. Author(s): Shenai JP, Rush MG, Stahlman MT, Chytil F. Source: The Journal of Pediatrics. 1992 September; 121(3): 399-401. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1517914&dopt=Abstract
Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
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AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
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Chinese Medicine: http://www.newcenturynutrition.com/
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drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
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Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
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Google: http://directory.google.com/Top/Health/Alternative/
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Open Directory Project: http://dmoz.org/Health/Alternative/
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TPN.com: http://www.tnp.com/
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Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
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WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
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WellNet: http://www.wellnet.ca/herbsa-c.htm
The following is a specific Web list relating to bronchopulmonary dysplasia; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:
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·
Herbs and Supplements Oral Corticosteroids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Corticosteroids_Oral.htm
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): ·
Healthy Child, Whole Child: Integrating the Best of Conventional and Alternative Medicine to Keep Your Kids Healthy by Stuart H. Ditchek, M.D. and Russell H. Greenfield; Paperback - 464 pages (June 2002), Harper Resource; ISBN: 0062737465; http://www.amazon.com/exec/obidos/ASIN/0062737465/icongroupinterna
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Alternative Medicine for Dummies by James Dillard (Author); Audio Cassette, Abridged edition (1998), Harper Audio; ISBN: 0694520659; http://www.amazon.com/exec/obidos/ASIN/0694520659/icongroupinterna
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Complementary and Alternative Medicine Secrets by W. Kohatsu (Editor); Hardcover (2001), Hanley & Belfus; ISBN: 1560534400; http://www.amazon.com/exec/obidos/ASIN/1560534400/icongroupinterna
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Dictionary of Alternative Medicine by J. C. Segen; Paperback-2nd edition (2001), Appleton & Lange; ISBN: 0838516211; http://www.amazon.com/exec/obidos/ASIN/0838516211/icongroupinterna
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Eat, Drink, and Be Healthy: The Harvard Medical School Guide to Healthy Eating by Walter C. Willett, MD, et al; Hardcover - 352 pages (2001), Simon & Schuster; ISBN: 0684863375; http://www.amazon.com/exec/obidos/ASIN/0684863375/icongroupinterna
· Encyclopedia of Natural Medicine, Revised 2nd Edition by Michael T. Murray, Joseph E. Pizzorno; Paperback - 960 pages, 2nd Rev edition (1997),
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Prima Publishing; ISBN: 0761511571; http://www.amazon.com/exec/obidos/ASIN/0761511571/icongroupinterna ·
Integrative Medicine: An Introduction to the Art & Science of Healing by Andrew Weil (Author); Audio Cassette, Unabridged edition (2001), Sounds True; ISBN: 1564558541; http://www.amazon.com/exec/obidos/ASIN/1564558541/icongroupinterna
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New Encyclopedia of Herbs & Their Uses by Deni Bown; Hardcover - 448 pages, Revised edition (2001), DK Publishing; ISBN: 078948031X; http://www.amazon.com/exec/obidos/ASIN/078948031X/icongroupinterna
· Textbook of Complementary and Alternative Medicine by Wayne B. Jonas; Hardcover (2003), Lippincott, Williams & Wilkins; ISBN: 0683044370; http://www.amazon.com/exec/obidos/ASIN/0683044370/icongroupinterna For additional information on complementary and alternative medicine, ask your child’s doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Biopharmaceutics: The study of the physical and chemical properties of a drug and its dosage form as related to the onset, duration, and intensity of its action. [NIH] Bleomycin: A complex of related glycopeptide antibiotics from Streptomyces verticillus consisting of bleomycin A2 and B2. It inhibits DNA metabolism and is used as an antineoplastic, especially for solid tumors. [NIH] Carboplatin: An organoplatinum compound that possesses antineoplastic activity. [NIH] Cocaine: An alkaloid ester extracted from the leaves of plants including coca. It is a local anesthetic and vasoconstrictor and is clinically used for that purpose, particularly in the eye, ear, nose, and throat. It also has powerful central nervous system effects similar to the amphetamines and is a drug of
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abuse. Cocaine, like amphetamines, acts by multiple mechanisms on brain catecholaminergic neurons; the mechanism of its reinforcing effects is thought to involve inhibition of dopamine uptake. [NIH] Etoposide: A semisynthetic derivative of podophyllotoxin that exhibits antitumor activity. Etoposide inhibits DNA synthesis by forming a complex with topoisomerase II and DNA. This complex induces breaks in double stranded DNA and prevents repair by topoisomerase II binding. Accumulated breaks in DNA prevent entry into the mitotic phase of cell division, and lead to cell death. Etoposide acts primarily in the G2 and S phases of the cell cycle. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Perforation: 1. the act of boring or piercing through a part. 2. a hole made through a part or substance. [EU] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
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APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements for bronchopulmonary dysplasia. Any dietary recommendation is based on age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with bronchopulmonary dysplasia may be given different recommendations. Some recommendations may be directly related to bronchopulmonary dysplasia, while others may be more related to general health. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of bronchopulmonary dysplasia. We will then show you how to find studies dedicated specifically to nutrition and bronchopulmonary dysplasia.
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Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
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Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
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Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
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Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your child’s diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
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Vitamin B1, also known as thiamine, is important for the nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
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Vitamin B2, also known as riboflavin, is important for the nervous system and muscles, but is also involved in the release of proteins from
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nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
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Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
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Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
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Vitamin C allows the body’s immune system to fight various medical conditions, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
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Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
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Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
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Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
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Folic Acid maintains healthy cells and blood; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
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Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
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Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
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Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
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Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
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Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
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Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
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Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
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Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, the doctor may encourage deviations from the average official recommendation based on your child’s specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/lab-cons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:47 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
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DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
47
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
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·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
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RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?48
Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”49 According to the ODS, dietary supplements can have an important impact on the prevention and management of medical conditions and on the maintenance of health.50 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 49 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 50 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 48
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overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected] Finding Studies on Bronchopulmonary Dysplasia The NIH maintains an office dedicated to nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.51 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
51
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found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “bronchopulmonary dysplasia” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “bronchopulmonary dysplasia” (or a synonym): ·
Advances and issues in bronchopulmonary dysplasia. Author(s): Department of Pediatrics, University of Wisconsin, Madison. Source: Zimmerman, J J Farrell, P M Curr-Probl-Pediatr. 1994 May-June; 24(5): 159-70 0045-9380
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Antioxidants, nutrition, and bronchopulmonary dysplasia. Author(s): Pulmonary Research Center, University of Miami School of Medicine, Florida. Source: Frank, L Clin-Perinatol. 1992 September; 19(3): 541-62 0095-5108
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Bronchopulmonary dysplasia. Pharmacologic treatments and prediction of outcome. Author(s): University of Washington School of Medicine. Source: Truog, W E Int-J-Technol-Assess-Health-Care. 1991; 7 Suppl 161-5 0266-4623
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Changes in pulmonary circulation in severe bronchopulmonary dysplasia. Author(s): Brompton Hospital, London. Source: Bush, A Busst, C M Knight, W B Hislop, A A Haworth, S G Shinebourne, E A Arch-Dis-Child. 1990 July; 65(7): 739-45 0003-9888
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Clinical trial of vitamin A supplementation in infants susceptible to bronchopulmonary dysplasia. Source: Shenai, J P Kennedy, K A Chytil, F Stahlman, M T J-Pediatr. 1987 August; 111(2): 269-77 0022-3476
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Current strategies in the management of bronchopulmonary dysplasia: the role of corticosteroids. Source: Knoppert, D C Mackanjee, H R Neonatal-Netw. 1994 April; 13(3): 53-60 0730-0832
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Current therapy of bronchopulmonary dysplasia. Author(s): Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.
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Source: Rush, M G Hazinski, T A Clin-Perinatol. 1992 September; 19(3): 563-90 0095-5108 ·
Dexamethasone increases plasma amino acid concentrations in bronchopulmonary dysplasia. Author(s): Department of Child Health, St George's Hospital Medical School, London. Source: Williams, A F Jones, M Arch-Dis-Child. 1992 January; 67(1 Spec No): 5-9 0003-9888
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Early high dose antioxidant vitamins do not prevent bronchopulmonary dysplasia in premature baboons exposed to prolonged hyperoxia: a pilot study. Author(s): Joint Program in Neonatology, Harvard Medical School, Boston, Massachusetts 02115, USA. Source: Berger, T M Frei, B Rifai, N Avery, M E Suh, J Yoder, B A Coalson, J J Pediatr-Res. 1998 June; 43(6): 719-26 0031-3998
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Evaluation of the mechanism causing anemia in infants with bronchopulmonary dysplasia. Author(s): Division of Human Development and Aging. Source: Christensen, R D Hunter, D D Goodell, H Rothstein, G J-Pediatr. 1992 April; 120(4 Pt 1): 593-8 0022-3476
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Failure of supplementation with vitamin E to prevent bronchopulmonary dysplasia in infants less than 1,500 g birth weight. Author(s): McMaster University Medical Centre, Hamilton, Ontario, Canada. Source: Watts, J L Milner, R Zipursky, A Paes, B Ling, E Gill, G Fletcher, B Rand, C Eur-Respir-J. 1991 February; 4(2): 188-90 0903-1936
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Fluid restriction for preventing bronchopulmonary dysplasia? Reduced fluid intake during the first weeks of life improves the outcome of lowbirth-weight infants. Author(s): Department of Pediatrics, University of Oulu, Finland. Source: Tammela, O K Koivisto, M E Acta-Paediatr. 1992 March; 81(3): 207-12 0803-5253
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Follow-up of school-age children with bronchopulmonary dysplasia. Author(s): Department of Pediatrics, University of Oklahoma College of Medicine Health Sciences Center, Tulsa 74129, USA. Source: Giacoia, G P Venkataraman, P S West Wilson, K I Faulkner, M J JPediatr. 1997 March; 130(3): 400-8 0022-3476
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·
Growth and body composition in infants with bronchopulmonary dysplasia up to 3 months corrected age: a randomized trial of a highenergy nutrient-enriched formula fed after hospital discharge. Author(s): Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada. Source: Brunton, J A Saigal, S Atkinson, S A J-Pediatr. 1998 September; 133(3): 340-5 0022-3476
·
Growth failure in infants with bronchopulmonary dysplasia: nutrition and elevated resting metabolic expenditure. Author(s): Division of Neonatology and Pediatric Pulmonology, Childrens Hospital of Los Angeles, CA 90027. Source: Kurzner, S I Garg, M Bautista, D B Bader, D Merritt, R J Warburton, D Keens, T G Pediatrics. 1988 March; 81(3): 379-84 0031-4005
·
Growth hormone does not prevent catabolic side effects of dexamethasone in extremely low birth weight preterm infants with bronchopulmonary dysplasia--a pilot study. Author(s): Divisione di Neonatologia e Terapia Intensiva Neonatale Istituto per l'Infanzia Burlo Garofolo, Trieste, Italy. Source: Tonini, G Pahor, T Colonna, F de Vonderweid, U J-PediatrEndocrinol-Metab. 1997 May-June; 10(3): 291-4
·
Increased airway leukotriene levels in infants with severe bronchopulmonary dysplasia. Author(s): Department of Pediatrics, University of Tennessee, Memphis. Source: Mirro, R Armstead, W Leffler, C Am-J-Dis-Child. 1990 February; 144(2): 160-1 0002-922X
·
Intrathecal morphine for postoperative analgesia in an infant with bronchopulmonary dysplasia following upper abdominal surgery. Author(s): Department of Anesthesiology, University of Missouri, School of Medicine, Columbia 65212, USA. Source: Krechel, S W Eggers, G W Helikson, M A Paediatr-Anaesth. 1996; 6(5): 423-6 1155-5645
·
Is chloride depletion an important contributing cause of death in infants with bronchopulmonary dysplasia? Source: Perlman, J.M. Moore, V. Siegel, M.J. Dawson, J. Pediatrics (USA). (February 1986). volume 77(2) page 212-216. bone diseases bronchi mortality infants diuretics chlorides alkalosis 0031-4005
·
Later growth and development in premature infants with bronchopulmonary dysplasia (BPD). Source: Tahy, A.R. McMullen, E.A. Kim, S.K. J-Pediatr-Perinat-Nutr. New York, N.Y. : Haworth Press. 1988. volume 2 (1) page 67-77. charts. 87566206
138 Bronchopulmonary Dysplasia
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&pag e=0
·
The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov
·
The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov
·
The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
·
The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
·
Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
·
Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
·
Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
·
Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
·
Google: http://directory.google.com/Top/Health/Nutrition/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Nutrition/
Researching Nutrition 139
·
Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
·
WebMDÒHealth: http://my.webmd.com/nutrition
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Abdominal: Pertaining to the abdomen. [EU] Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH] Antioxidants: Naturally occurring or synthetic substances that inhibit or retard the oxidation of a substance to which it is added. They counteract the harmful and damaging effects of oxidation in animal tissues. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrates: A nutrient that supplies 4 calories/gram. They may be simple or complex. Simple carbohydrates are called sugars, and complex carbohydrates are called starch and fiber (cellulose). An organic compound—containing carbon, hydrogen, and oxygen—that is formed by photosynthesis in plants. Carbohydrates are heat producing and are classified as monosaccharides, disaccharides, or polysaccharides. [NIH] Chlorides: Inorganic compounds derived from hydrochloric acid that contain the Cl- ion. [NIH] Cholesterol: A soft, waxy substance manufactured by the body and used in the production of hormones, bile acid, and vitamin D and present in all parts of the body, including the nervous system, muscle, skin, liver, intestines, and heart. Blood cholesterol circulates in the bloodstream. Dietary cholesterol is found in foods of animal origin. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Intrathecal: Within a sheath. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a
140 Bronchopulmonary Dysplasia
nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Morphine: The principal alkaloid in opium and the prototype opiate analgesic and narcotic. Morphine has widespread effects in the central nervous system and on smooth muscle. [NIH] Neonatology: infant. [NIH]
A subspecialty of Pediatrics concerned with the newborn
Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Overweight: An excess of body weight but not necessarily body fat; a body mass index of 25 to 29.9 kg/m2. [NIH] Postoperative: Occurring after a surgical operation. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Thermoregulation: Heat regulation. [EU]
Finding Medical Libraries 141
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.52
52
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
142 Bronchopulmonary Dysplasia
Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):53 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
·
Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
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Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
·
California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
·
California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
·
California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
53
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 143
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
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California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
·
Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
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Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
·
Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
144 Bronchopulmonary Dysplasia
·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
·
Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
·
Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
·
Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
·
Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
·
Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
·
Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
·
Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
·
Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
·
Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
·
Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 145
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
·
Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
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Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
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Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
·
Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/
·
Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
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Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
·
Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
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Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
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Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
·
Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
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Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
·
Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
146 Bronchopulmonary Dysplasia
·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
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New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
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New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
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New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
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New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
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New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
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New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
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Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
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Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 147
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
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Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
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Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
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Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
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Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
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Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
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Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Child’s Rights and Insurance 149
APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE Overview Parents face a series of issues related more to the healthcare industry than to their children’s medical conditions. This appendix covers two important topics in this regard: your responsibilities and your child’s rights as a patient, and how to get the most out of your child’s medical insurance plan.
Your Child’s Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your child’s rights as a patient.54
54Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
150 Bronchopulmonary Dysplasia
Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access
Your Child’s Rights and Insurance 151
to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan. ·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days to allow for transition of care.
·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans. Access to Emergency Services
Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide parents with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a parent in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
benefits,
and
consequences
to
treatment
or
152 Bronchopulmonary Dysplasia
·
Give parents the opportunity to refuse treatment for their children and to express preferences about future treatment decisions.
·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with parents.
·
Abide by the decisions made by parents consistent with the informed consent process.
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise parents about medically necessary treatment options for their children.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients. Respect and Nondiscrimination
Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information
Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable
Your Child’s Rights and Insurance 153
healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.55
Parent Responsibilities To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your child’s care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that parents understand the following “Consumer Responsibilities.”56 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater involvement by parents in their children’s care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing your child’s healthy habits.
·
Work collaboratively with healthcare providers in developing and carrying out your child’s agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use the insurance company’s internal complaint and appeal processes to address your concerns.
·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 56 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 55
154 Bronchopulmonary Dysplasia
·
Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to the community.
·
Become knowledgeable about health plan coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.57 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for your family.58 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your family’s needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to your family. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 58 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 57
Your Child’s Rights and Insurance 155
you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your family’s benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your family’s health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your family’s health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had
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prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits your family will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if a health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits your family receives. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. In the following pages, you will learn the basics about Medicaid as well as useful contact information on how to find more in-depth information. Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm.
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NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.59 NORD programs ensure that certain vital drugs are available “to those families whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare medical conditions. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:60 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
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Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
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HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
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Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
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Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
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Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
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Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 60 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 59
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·
Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
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Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html
More on the Lungs 159
APPENDIX F. MORE ON THE LUNGS Overview
61
Breathing is important because your body needs the oxygen in the air you breathe to create the energy that keeps you alive. Your respiratory system carries the oxygen to your lungs, where it enters your bloodstream to travel throughout your body. This system also carries the “used” air, which is mostly carbon dioxide, back to your lungs so that you can breathe it out. When fresh air is breathed in through the nose and mouth, it is pulled through the windpipe or trachea and into the lungs. There it moves through two large passageways, called the bronchi. Then a complex system of much smaller tubes or bronchioles branch out to carry oxygen to the “working parts” of the lungs -- millions of air sacs or alveoli. These small sacs (like tiny folded balloons) have very thin walls that are full of blood vessels. The walls are so thin that the oxygen in the air can pass through them to enter your bloodstream and travel to cells in all parts of your body. In the alveoli, your muscles burn food, using the oxygen you inhale, and create a byproduct gas, carbon dioxide, which is “used” air. Carbon dioxide, is blown out of your body every time you breathe out.
Introduction
62
Breathing for most of us is something we do without being aware of it. We pay no attention to this continuous activity as we work, play, or sleep. Our From the National Lung Health Education Program: http://www.nlhep.org/lung.htm#trachea. 62 From NHLBI: http://www.nhlbi.nih.gov/health/public/lung/other/lungs_hd.pdf. 61
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lungs are responsible for this essential natural function that gets oxygen into the bloodstream so that it can be delivered to the cells of our body. During a normal day, we breathe nearly 25,000 times. The more than 10,000 liters of air we inhale is mostly oxygen and nitrogen. In addition, there are small amounts of other gases, floating bacteria, and viruses. It also contains the products of tobacco smoke, automobile exhaust, and other pollutants from the atmosphere in varying amounts. Air pollutants can affect our lungs in many ways. They may simply cause irritation and discomfort. But sometimes inhaled materials can cause illness or death. The lungs have a series of built-in mechanical and biological barriers that keep harmful materials from entering the body. In addition, specific defense mechanisms can inactivate some disease-causing materials. However, sometimes the normal lung defenses and barriers in the lungs do not work as well as they should. Medical problems at birth or during infancy and growth can affect lung development. Later in life the lungs may be damaged by smoking, occupational exposures, or accidents. These abnormalities allow air pollutants to break through the lung’s defenses. The result can be respiratory problems or diseases. This brochure describes the unique structure and functions of the human lung that help maintain respiratory health. It explains how the lungs’ inability to carry out their tasks can cause disease or disability. It also lists some simple suggestions for warding off conditions that cause the lungs to malfunction. The following is offered by the National Heart, Lung, and Blood Institute (NHLBI) together with the National Lung Health Education Program (NLHEP) to meet the common goal of promoting lung health and preventing or reducing lung disease.
The Lungs: A Historical View Nearly 2,000 years ago, Claudius Galen, a Greek physician, wrote that the lung was an instrument of voice and respiration. He thought that the purpose of respiration was to cool the heart by “the substance of the air.” His concept was that breathing in (inspiration) supplied a cooling substance to the heart while breathing out (expiration) removed hot material from it. At the end of the 16th century, a Dutch scientist, Fabricius, expressed the view that the function of the lungs was to prepare air for the heart. Until the middle of the 17th century, the lungs were thought to be a solid, compact, fleshy mass. At that time Marcello Malpighi, an Italian anatomist, and
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Thomas Willis, an English clinician, noted independently that the lungs were a system of canals made up of membranes, air passages, and blood vessels. Many of the currently used terms for the components of the lung such as lobules, alveoli, arteries, and veins come from these authors. In 1628, William Harvey, a British physician and physiologist, described his theory of circulation and proposed that the blood was pumped through the lungs by the expansion and contraction of the lungs during breathing. The lungs were once thought to be a solid mass. Our knowledge about the lungs has come a long way during the more than 300 years since Malpighi, Willis, and Harvey. Today we know that the lungs are a pair of cone-shaped, soft, spongy, pinkish, organs. They get oxygen into the blood and remove carbon dioxide, a waste-product of the body. We have also learned that a major function of the lungs is to protect the body from potentially harmful airborne agents and toxic chemicals that our body may produce. We now know that the lungs have both “respiratory” and “nonrespiratory” functions. The respiratory function of the lungs is “gas exchange.” This is the term for the transfer of oxygen from the air into the blood and the removal of carbon dioxide from the blood. The nonrespiratory functions of the lungs are mechanical, bio-chemical, and physiological. The lungs provide the first line of defense against airborne irritants and bacterial, viral, and other infectious agents. They also remove volatile substances and particles of matter generated within the body. The lungs control the flow of water, ions, and large proteins across its various cellular structures. Together with the liver, they remove various products of the body’s metabolic reactions. The lungs also manufacture a variety of essential hormones and other chemicals that have precise biological roles.
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Human Respiratory System
63
How Do Normal Lungs Work?
64
Air usually enters the nose and mouth and goes down the air tube (trachea) to two main air passages (bronchi). These passages allow air to go into the right and left lung. Each bronchus branches out into grape-like air sacs called alveoli. Through the alveoli, oxygen enters the bloodstream during breathing in (inspiration), and carbon dioxide, a waste product, leaves the body during breathing out (expiration). White blood cells normally found in our bodies help protect us from infection. But white blood cells also release an enzyme, called neutrophil elastase, that can damage the lungs. In normal lungs, alpha-1 antitrypsin protects the lungs from the harmful effects of neutrophil elastase.
63 64
From NHLBI: http://www.nhlbi.nih.gov/health/public/lung/other/copd/resp_sys.htm. From the NHLBI: http://www.nhlbi.nih.gov/health/public/lung/other/antitryp.htm.
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Lung Structure and Function: The Big Picture The lungs are shaped like cones and textured like a fine grained sponge that can be inflated with air. They sit within the thoracic cage where they stretch from the trachea (windpipe) to below the heart. About 10 percent of the lung is solid tissue, the remainder is filled with air and blood. This unique structure of the lung is delicate enough for gas exchange and yet strong enough to maintain its shape and enable it to perform the many functions vital for keeping us healthy. Two “plumbing” systems, the airways for ventilation (exchange of air between the lungs and the atmosphere) and the circulatory system for perfusion (blood flow), are coordinated by special muscles and nerves. This arrangement enables the lung to perform its primary function of rapidly exchanging oxygen from inhaled air with the carbon dioxide from the blood. Air enters the body through the nose or the mouth, and travels down the throat and trachea into the chest through a pair of air tubes called bronchi (plural for bronchus). The bronchi divide and subdivide into successive generations of narrower and shorter branching tubes of unequal length and diameter. The final destination for inhaled air is the network of about 3 million air sacs, called alveoli, located at the ends of the lungs’ air passages. Between the trachea and alveoli, the lungs look like an inverted tree. The first (main) branching of the trachea leads to the left and right lungs. The two lungs fill most of the chest cavity. Between the lungs are located the heart, the major blood vessels, the trachea, the esophagus (tube leading from the throat to the stomach), and lymph nodes. The thorax (chest wall) surrounds and supports the lungs. Movement of the air into the lungs is controlled by the respiratory muscles of the thorax. These muscles, collectively called the ventilatory apparatus, include the diaphragm (the muscle that separates the chest and abdominal contents) and the muscles that move the ribs. When the respiratory muscles contract, the chest enlarges like a bellows sucking in air (inhalation). As air fills the lungs they expand automatically. The lungs return to their original (resting) size when we exhale. The performance of the ventilatory apparatus is coordinated by specific nerve sites, called respiratory centers, located in the brain and the neck. The respiratory centers respond to changes in oxygen, carbon dioxide, and acid levels in the blood. Normal concentrations of these chemicals in arterial blood are maintained by changing the breathing rate. The right lung is slightly larger than the left lung and is divided into three sections or lobes;
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the left lung has only two lobes. Each lobe is subdivided into two to five bronchopulmonary segments. The segments are further subdivided into lobules served by smaller branches of the bronchi. The outside of the lung and the inside of the chest cavity are lined by a single continuous membrane called the pleura. The portion of the pleura surrounding the lungs is called the visceral pleura, while the portion lining the chest cavity is called the parietal pleura. The potential space between the lungs and the inside of the chest cavity is called the pleural space or pleural cavity. The pleural space is moistened with a fluid that lubricates the pleurae as they slide back and forth on each other during ventilation. Normally the pleural space contains only a small amount of fluid and is free of any gas, blood, or other matter. Blood vessels, bronchi, and nerves come together at the entrance of the lung called the hilum. Bronchopulmonary lymph nodes, important for the drainage of the lungs, are located here. The extensive nervous system of the lungs extends from the hilum to almost all of the lungs’ structural units.
The Conducting Airways The first 16 subdivisions of the bronchi ending in terminal bronchioles are called the conducting airways. Terminal bronchioles are the smallest airways without alveoli. They further divide into respiratory bronchioles, ending in alveolar ducts. Respiratory bronchioles have occassional alveoli budding from their walls, while alveolar ducts are completely lined with alveoli. The last seven branchings of the bronchioles where gas exchange occurs are called the respiratory zone. The terminal respiratory unit of the lung from the respiratory bronchiole to the alveolus is called the acinus.
Gas Exchange Gas exchange between inhaled air and blood takes place in the alveoli. Blood is brought to the alveoli through a fine network of pulmonary capillaries where it is spread in a thin film. The barrier separating the air and blood is extremely thin, 50 times thinner than a sheet of tissue paper. A large surface area (80 square meters, as large as a tennis court) is available for gas exchange. In the resting state, it takes just about a minute for the total blood volume of the body (about 5 liters) to pass through the lungs. It takes a red cell a fraction of a second to pass through the capillary network. Gas exchange occurs almost instantaneously during this short period.
More on the Lungs 165
Cellular and Molecular Aspects At the cellular and molecular level, maintained by a unique arrangement cellular elements. This includes some muscles, and molecules, strategically patterns in various parts of the lung.
the components of the lung are of diverse structural proteins and 40 different types of cells, glands, arranged in intricate but orderly
The controlled complexity of the various parts of the lungs facilitates their many functions. Oxygen-poor blood is pumped from the right ventricle of the heart through a system of pulmonary arteries, arterioles, and capillaries to the alveoli, and the oxygen-rich blood is returned to the left heart through a collecting system of venules and veins. This extensive system, called the pulmonary circulation, filters clots, fat particles, and cellular debris from the bloodstream. It also moves liquid and large and small molecules across the pulmonary blood vessels, providing oxygen and nutrients, and facilitating various metabolic functions of the lung including the synthesis of substances such as surfactant. The lungs also have a second blood supply from the bronchial circulation. The purpose of this blood supply is to provide nutrients especially for the large airways. Bronchial circulation represents only a small portion (1-2 percent) of the cardiac output. In this system, bronchial arteries bring oxygenated blood from the left side of the heart to the airways (bronchi, bronchioles) and the supporting structures (connective tissue) of the lung. Bronchial venous blood is returned, just like the venous blood from the rest of the body, to the right atrium. Bronchial circulation is believed to be more important in the fetal lung than in the adult lung. Conducting airways receive their blood supply from branches of bronchial arteries, while the terminal respiratory units receive blood from branches of the pulmonary arteries. Gas exchange occurs by diffusion of gases across the alveolar membranes into and out of the blood as it flows through the capillaries. Oxygen-poor blood discards its carbon dioxide into the alveoli, and hemoglobin, an oxygen-carrying protein in the red blood cells, binds with oxygen from inhaled air (becomes “arterialized”). Although the red blood cells are exposed to alveolar air only for a fraction of a second, gas exchange between alveoli and capillaries takes place very efficiently because there is an extremely large surface area between the blood and the air. The bronchi contain specialized connective tissue (cartilage), while bronchioles are noncartilaginous.
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The bronchi mostly serve nonrespiratory roles such as ridding the airways of irritating particles; their only respiratory function is to carry air from the external environment to the distal sites of gas exchange. The arteries and capillaries that bring blood to the alveoli are lined with a layer of delicate specialized cells called endothelial cells. The air-blood barrier is composed of three tissue layers — an endothelium lining the capillaries; an epithelium lining the airspaces; and, between them, an interstitial layer composed of connective tissue, interstitial extracellular matrix, and mesenchymal cells. The interstitial layer also contains special cells — alveolar macrophages, lymphocytes, and inflammatory cells — that can defend or injure the lungs, depending on the situation. Dispersed throughout the interstitium are proteins, lipids, carbohydrates, and other substances derived from plasma and cells. The endothelium acts as a barrier retarding the passage of fluid, proteins, and other blood components from the vessel lumen into the interstitium and air spaces of the lung. In addition, the endothelial cells perform many of the nonrespiratory functions of the lung, particularly the transformation of a variety of bioactive substances. The walls of the conducting airways are mostly composed of epithelial lining, connective tissue elements, and a smooth muscle sleeve. The exact proportion of these constituents varies depending on whether the walls are in the large bronchi, the bronchioles, or the alveoli. The epithelium also contains unique mixtures of cells with distinct functions. These functions vary depending on the level of the airway at which the cells are located. The lungs’ first line of defense against injury from inhaled agents is a mix of anatomic barriers, nonspecific mechanical and cellular defenses, antimicrobial secretions, and circulating and resident scavenger (phagocytic) cells that engulf or digest particulates. Removal of particles from the conducting airways (nose to respiratory bronchioles) is carried out by “mucociliary clearance,” helped by airway secretions. A film of mucus produced in the lungs envelops the particles which are then continuously moved by the rhythmic beating motions of cilia (hair-like structures that extend from the surface of the cells) to the oropharynx where they are swallowed or coughed out. These defenses are present at birth. Operating beyond the nonspecific defenses, are specific acquired immune mechanisms that are latent until activated by natural (maternal transfer or infections) or artificial exposures (vaccinations) to foreign materials. These highly specific defenses of the lung are initiated by complex interactions between foreign substances (antigens) and specialized cells.
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These interactions result in antibody-mediated or cell-mediated immunities that provide uniquely specific defenses against certain organisms or agents. Research supported by the National Heart, Lung, and Blood Institute is generating new knowledge on previously unrecognized physiological and metabolic processes and mediators operating in the lung. Scientists now realize that the lung, an organ once thought to be merely an inert balloon serving as a receptacle for air, is in reality a powerhouse of concerted and interrelated mechanical, physiological, neurological, immunological, pharmacological, and metabolic functions necessary to sustain life.
Online Glossaries 169
ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
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MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
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Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
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Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
·
On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
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Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
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Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to bronchopulmonary dysplasia and keep them on file. The NIH, in particular, suggests that parents of children with bronchopulmonary dysplasia visit the following Web sites in the ADAM Medical Encyclopedia: ·
Basic Guidelines for Bronchopulmonary Dysplasia
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Bronchopulmonary dysplasia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm ·
Signs & Symptoms for Bronchopulmonary Dysplasia Bluish skin Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003215.htm Breathing, rapid Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003071.htm
·
Diagnostics and Tests for Bronchopulmonary Dysplasia Arterial blood gas Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003855.htm Chest x-ray Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003804.htm Endotracheal intubation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003449.htm X-ray Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003337.htm
·
Background Topics for Bronchopulmonary Dysplasia Breathing problems Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000007.htm Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm
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Heart disease Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000147.htm Incidence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002387.htm Respiratory Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002290.htm
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
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MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
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Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
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Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
Glossary 173
BRONCHOPULMONARY DYSPLASIA GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Abdominal: Pertaining to the abdomen. [EU] Aberrant: Wandering or deviating from the usual or normal course. [EU] Acinus: The berrylike ending of a tiny airway in the lung, where the alveoli (air sacs) are located. [NIH] ACTH: Adrenocorticotropic hormone. [EU] Acuity: Clarity or clearness, especially of the vision. [EU] Adenocarcinoma: organization. [NIH]
A malignant epithelial tumor with a glandular
Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Airways: Tubes that carry air into and out of the lungs. [NIH] Alkalosis: A pathologic condition resulting from accumulation of base, or from loss of acid without comparable loss of base in the body fluids, and characterized by decrease in hydrogen ion concentration (increase in pH). [EU]
Alveoli: Tiny sac-like air spaces in the lungs where transfer of carbon dioxide from blood into the lungs and oxygen from air into blood takes place. [NIH] Alveolitis: Inflammation of the alveoli. [NIH] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH]
Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH]
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Antecedent: Existing or occurring before in time or order often with consequential effects. [EU] Antibiotic: A drug that kills or inhibits the growth of bacteria. [NIH] Antibodies: Specific proteins produced by the body's immune system that bind with foreign proteins (antigens). [NIH] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Arteries: The vessels carrying blood away from the heart. [NIH] Arthroplasty: Surgical reconstruction of a joint to relieve pain or restore motion. [NIH] Aspergillosis: Infections with fungi of the genus aspergillus. [NIH] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Beclomethasone: An anti-inflammatory, synthetic glucocorticoid. It is used topically as an anti-inflammatory agent and in aerosol form for the treatment of asthma. [NIH] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Biopharmaceutics: The study of the physical and chemical properties of a drug and its dosage form as related to the onset, duration, and intensity of its action. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Bleomycin: A complex of related glycopeptide antibiotics from Streptomyces verticillus consisting of bleomycin A2 and B2. It inhibits DNA metabolism and is used as an antineoplastic, especially for solid tumors. [NIH] Bombesin: A tetradecapeptide originally obtained from the skins of toads Bombina bombina and B. variegata. It is also an endogenous neurotransmitter in many animals including mammals. Bombesin affects vascular and other smooth muscle, gastric secretion, and renal circulation and function. [NIH]
Glossary 175
Bronchial: Pertaining to one or more bronchi. [EU] Bronchiole: The smaller airways of the lungs. [NIH] Bronchiolitis: Inflammation of the bronchioles, usually caused by a viral infection. [NIH] Bronchitis: Inflammation of one or more bronchi. [EU] Bronchodilator: A drug that relaxes the smooth muscles in the constricted airway. [NIH] Bronchography: Radiography of the bronchial tree after injection of a contrast medium. [NIH] Bronchopulmonary: Pertaining to the lungs and air passages. [NIH] Bronchoscope: A long, narrow tube with a light at the end that is used by the doctor for direct observation of the airways, as well as for suction of tissue and other materials. [NIH] Bronchoscopy: A technique for visualizing the interior of bronchi and instilling or removing fluid or tissue samples by passing a lighted tube (bronchoscope) through the nose or mouth into the bronchi. [NIH] Calcification: The process by which organic tissue becomes hardened by a deposit of calcium salts within its substance. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrates: A nutrient that supplies 4 calories/gram. They may be simple or complex. Simple carbohydrates are called sugars, and complex carbohydrates are called starch and fiber (cellulose). An organic compound—containing carbon, hydrogen, and oxygen—that is formed by photosynthesis in plants. Carbohydrates are heat producing and are classified as monosaccharides, disaccharides, or polysaccharides. [NIH] Carboplatin: An organoplatinum compound that possesses antineoplastic activity. [NIH] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Cardiac: Pertaining to the heart. [EU] Cardiomyopathy: A disease of the heart muscle (myocardium). [NIH] Cardiopulmonary: Pertaining to the heart and lungs. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Caudal: Denoting a position more toward the cauda, or tail, than some specified point of reference; same as inferior, in human anatomy. [EU] Cell: Basic subunit of every living organism; the simplest unit that can exist as an independent living system. [NIH]
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Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chlorides: Inorganic compounds derived from hydrochloric acid that contain the Cl- ion. [NIH] Cholesterol: A soft, waxy substance manufactured by the body and used in the production of hormones, bile acid, and vitamin D and present in all parts of the body, including the nervous system, muscle, skin, liver, intestines, and heart. Blood cholesterol circulates in the bloodstream. Dietary cholesterol is found in foods of animal origin. [NIH] Chromosomal: Pertaining to chromosomes. [EU] Chronic: Of long duration; frequently recurring. [NIH] Cocaine: An alkaloid ester extracted from the leaves of plants including coca. It is a local anesthetic and vasoconstrictor and is clinically used for that purpose, particularly in the eye, ear, nose, and throat. It also has powerful central nervous system effects similar to the amphetamines and is a drug of abuse. Cocaine, like amphetamines, acts by multiple mechanisms on brain catecholaminergic neurons; the mechanism of its reinforcing effects is thought to involve inhibition of dopamine uptake. [NIH] Colitis: Inflammation of the colon. [EU] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Colposcopy: The examination, therapy or surgery of the cervix and vagina by means of a specially designed endoscope introduced vaginally. [NIH] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Confounding: Extraneous variables resulting in outcome effects that obscure or exaggerate the "true" effect of an intervention. [NIH] Congestion: Abnormal fluid accumulation in the body, especially the lungs. [NIH]
Conization: The excision of a cone of tissue, especially of the cervix uteri. [NIH]
Contraceptive: conception. [EU] Contractility: stimulus. [EU]
An agent that diminishes the likelihood of or prevents Capacity for becoming short in response to a suitable
Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Corticosteroids:
Drugs that mimic the action of a group of hormones
Glossary 177
produced by adrenal glands; they are anti-inflammatory and act as bronchodilators. [NIH] Criterion: A standard by which something may be judged. [EU] Crowding: Behavior with respect to an excessive number of individuals, human or animal, in relation to available space. [NIH] Cyanosis: Bluish color of the skin due to insufficient oxygen in the blood. [NIH]
Cyanotic: Bluish color of the skin due to insufficient oxygen. [NIH] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dislocation: The displacement of any part, more especially of a bone. Called also luxation. [EU] Dysplasia: Abnormal development or growth. [NIH] Edema: Abnormal fluid accumulation in body tissues. [NIH] Efficacy: The extent to which a specific intervention, procedure, regimen, or service produces a beneficial result under ideal conditions. Ideally, the determination of efficacy is based on the results of a randomized control trial. [NIH] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with living bodies and involved in their functional activity. [EU] Emphysema: Chronic lung disease in which there is permanent destruction of alveoli. [NIH] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Endotracheal intubation: Insertion of an airtube into the windpipe. [NIH] Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Erythrocytes:
Red blood cells. Mature erythrocytes are non-nucleated,
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biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Etoposide: A semisynthetic derivative of podophyllotoxin that exhibits antitumor activity. Etoposide inhibits DNA synthesis by forming a complex with topoisomerase II and DNA. This complex induces breaks in double stranded DNA and prevents repair by topoisomerase II binding. Accumulated breaks in DNA prevent entry into the mitotic phase of cell division, and lead to cell death. Etoposide acts primarily in the G2 and S phases of the cell cycle. [NIH] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Extracellular: Outside a cell or cells. [EU] Facial: Of or pertaining to the face. [EU] Fenretinide: A synthetic retinoid that is used orally as a chemopreventive against prostate cancer and in women at risk of developing contralateral breast cancer. It is also effective as an antineoplastic agent. [NIH] Fetus: Unborn offspring from 7 or 8 weeks after conception until birth. [NIH] Fibrosis: Process by which inflamed tissue becomes scarred. [NIH] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] Gait: Manner or style of walking. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gastroscopy: Endoscopic examination, therapy or surgery of the interior of the stomach. [NIH] Gestation: The period of development of the young in viviparous animals, from the time of fertilization of the ovum until birth. [EU] Gynaecological: Pertaining to gynaecology. [EU] Gynecology: A medical-surgical specialty concerned with the physiology
Glossary 179
and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hbridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hyperoxia: An abnormal increase in the amount of oxygen in the tissues and organs. [NIH] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Hypertension: High blood pressure (i.e., abnormally high blood pressure tension involving systolic and/or diastolic levels). The Sixth Report of the Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure defines hypertension as a systolic blood pressure of 140 mm Hg or greater, a diastolic blood pressure of 90 mm Hg or greater, or taking hypertensive medication. The cause may be adrenal, benign, essential, Goldblatt's, idiopathic, malignant PATE, portal, postpartum, primary, pulmonary, renal or renovascular. [NIH] Hypertrophy: Nutrition) the enlargement or overgrowth of an organ or part due to an increase in size of its constituent cells. [EU] Idiopathic: Results from an unknown cause. [NIH] Immaturity: The state or quality of being unripe or not fully developed. [EU] Immunization: Protection from disease by administering vaccines that induce the body to form antibodies against infectious agents. [NIH] Immunohistochemistry: Histochemical localization of immunoreactive substances using labeled antibodies as reagents. [NIH] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Inflammation: Response of the body tissues to injury; typical signs are swelling, redness, and pain. [NIH] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator
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of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Intrathecal: Within a sheath. [EU] Intravenous: Within a vein or veins. [EU] Invasive: 1. having the quality of invasiveness. 2. involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Irritants: Drugs that act locally on cutaneous or mucosal surfaces to produce inflammation; those that cause redness due to hyperemia are rubefacients; those that raise blisters are vesicants and those that penetrate sebaceous glands and cause abscesses are pustulants; tear gases and mustard gases are also irritants. [NIH] Isotretinoin: A topical dermatologic agent that is used in the treatment of acne vulgaris and several other skin diseases. The drug has teratogenic and other adverse effects. [NIH] Lavage: To wash the interior of a body organ. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lethal: Deadly, fatal. [EU] Lip: Either of the two fleshy, full-blooded margins of the mouth. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lipoxygenase: An enzyme of the oxidoreductase class that catalyzes reactions between linoleate and other fatty acids and oxygen to form hydroperoxy-fatty acid derivatives. Related enzymes in this class include the arachidonate lipoxygenases, arachidonate 5-lipoxygenase, arachidonate 12lipoxygenase, and arachidonate 15-lipoxygenase. ec 1.13.11.12. [NIH] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU]
Glossary 181
Membrane: Thin, flexible film of proteins and lipids that encloses the contents of a cell; it controls the substances that go into and come out of the cell. Also, a thin layer of tissue that covers the surface or lines the cavity of an organ. [NIH] Metaplasia: The change in the type of adult cells in a tissue to a form which is not formal for that tissue. [EU] Microscopy: The application of microscope magnification to the study of materials that cannot be properly seen by the unaided eye. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Morphine: The principal alkaloid in opium and the prototype opiate analgesic and narcotic. Morphine has widespread effects in the central nervous system and on smooth muscle. [NIH] Mucosa: A mucous membrane, or tunica mucosa. [EU] Mucus: A thick fluid produced by the lining of some organs of the body. [NIH]
Nasal: Pertaining to the nose. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neonatologist: Doctor who specializes in treating the diseases and disorders of newborn babies. [NIH] Neonatology: infant. [NIH]
A subspecialty of Pediatrics concerned with the newborn
Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Osteotomy: The surgical cutting of a bone. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Overweight: An excess of body weight but not necessarily body fat; a body
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mass index of 25 to 29.9 kg/m2. [NIH] Papillomavirus: A genus of papovaviridae causing proliferation of the epithelium, which may lead to malignancy. A wide range of animals are infected including humans, chimpanzees, cattle, rabbits, dogs, and horses. [NIH]
Paradoxical: Occurring at variance with the normal rule. [EU] Paraffin: A mixture of solid hydrocarbons obtained from petroleum. It has a wide range of uses including as a stiffening agent in ointments, as a lubricant, and as a topical anti-inflammatory. It is also commonly used as an embedding material in histology. [NIH] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Pathogenesis: The cellular events and reactions that occur in the development of disease. [NIH] Pathophysiology: Altered functions in an individual or an organ due to disease. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perforation: 1. the act of boring or piercing through a part. 2. a hole made through a part or substance. [EU] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Phosphorylation: The introduction of a phosphoryl group into a compound through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Placenta: The special tissue that joins the mother to her fetus; it provides the fetus with oxygen, water, and nutrients (food) from the mother's blood and secretes the hormones necessary for successful pregnancy. [NIH] Pneumonia: Inflammation of the lungs. [NIH] Pneumothorax: Accumulation of air or gas in the space between the lung and chest wall, resulting in partial or complete collapse of the lung. [NIH] Postnatal: Occurring after birth, with reference to the newborn. [EU] Postoperative: Occurring after a surgical operation. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic
Glossary 183
symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Prenatal: Occurring before birth. [NIH] Prevalence: The number of events, e.g., instances of a given disease or other condition, in a given population at a designated time. When used without qualification, the term usually refers to the situation at specific point in time (point prevalence). Prevalence is a number, not a rate. [NIH] Progressive: Increasing in severity. [NIH] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Reflux: A backward or return flow. [EU] Regeneration: The natural renewal of a structure, as of a lost tissue or part. [EU]
Respiration: Process of exchanging oxygen from the air for carbon dioxide from the body; includes the mechanical process of breathing, gas exchange, and oxygen and carbon dioxide transport to and from the cells. [NIH] Respiratory: Pertaining to respiration. [EU] Resuscitation: The restoration to life or consciousness of one apparently dead; it includes such measures as artificial respiration and cardiac massage. [EU]
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Retina: The inner layer of tissue at the back of the eye that is sensitive to light. [NIH] Retinoids: Derivatives of vitamin A. Used clinically in the treatment of severe cystic acne, psoriasis, and other disorders of keratinization. Their possible use in the prophylaxis and treatment of cancer is being actively explored. [NIH] Retraction: 1. the act of drawing back; the condition of being drawn back. 2. distal movement of teeth, usually accomplished with an orthodontic appliance. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Squamous: Scaly, or platelike. [EU] Stabilization: The creation of a stable state. [EU] Surfactant: A fat-containing protein in the respiratory passages which reduces the surface tension of pulmonary fluids and contributes to the elastic properties of pulmonary tissue. [NIH]
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Surgical: Of, pertaining to, or correctable by surgery. [EU] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Systemic: Relating to a process that affects the body generally; in this instance, the way in which blood is supplied through the aorta to all body organs except the lungs. [NIH] Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Thermoregulation: Heat regulation. [EU] Thoracic: Pertaining to or affecting the chest. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Ventilation: The process of exchange of air between the lungs and the atmosphere leading to exchange of gases in the blood. [NIH] Ventilator: A breathing machine that is used to treat respiratory failure by promoting ventilation; also called a respirator. [NIH] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Wheezing: Breathing with a rasp or whistling sound; a sign of airway constriction or obstruction. [NIH]
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General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
·
Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna
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A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
·
Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
·
Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
·
Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
·
Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
·
Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
Glossary 187
·
Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
·
Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
188 Bronchopulmonary Dysplasia
INDEX A Abdomen ...............................14, 139, 173 Abdominal............................................137 Acinus ....................................................21 Acuity...................................................123 Adolescence ..............30, 48, 54, 173, 182 Adverse .....13, 14, 19, 22, 49, 75, 78, 180 Airways ............11, 12, 17, 22, 28, 86, 175 Alkalosis ........................................60, 137 Alveoli ......11, 12, 20, 21, 22, 28, 29, 173, 177 Alveolitis ................................................21 Anesthesia.............................25, 139, 173 Antibodies..........................23, 30, 78, 179 Antioxidant.............................21, 123, 136 Apnea ....................................................20 Arteries ............................................12, 22 B Bacteria .............13, 28, 32, 130, 174, 185 Benign ...........................................30, 179 Bleomycin ....................................127, 174 Bombesin...............................................23 Bronchial............................22, 23, 88, 175 Bronchiolitis .........................15, 19, 23, 26 Bronchography ......................................88 Bronchoscope................................88, 175 Bronchoscopy........................................88 C Capsules..............................................133 Carbohydrates .....................130, 139, 175 Cardiac ....................................49, 55, 183 Cardiopulmonary .............................46, 49 Cardiovascular.......................................22 Cell .......28, 30, 43, 55, 78, 100, 101, 128, 174, 177, 178, 180, 181, 183 Chlorides .............................................137 Cholesterol ..................130, 132, 139, 176 Chromosomal ................................80, 185 Chronic .....11, 12, 13, 26, 42, 44, 46, 47, 83, 100, 151 Collapse...................................22, 31, 182 Conception ................16, 29, 86, 176, 178 Congestion ............................................18 Contractility............................................23 Cortical ..........................................80, 184 Corticosteroids...................19, 22, 47, 135 Criterion .................................................15 Cyanosis ................................................20 Cyanotic.................................................15 Cytokines ...............................................43
D Degenerative ...................................... 131 Diarrhea .............................................. 130 E Edema................................. 16, 21, 22, 45 Efficacy ....................... 45, 47, 48, 55, 177 Emphysema .......................................... 22 Endoscopy ............................................ 82 Epithelium ..................................... 79, 182 Erythrocytes .................................. 77, 177 Excitation ...................................... 77, 178 F Facial .................................................... 85 Fetus ....................................... 20, 30, 182 Fibrosis ..................................... 13, 19, 23 Fistula ..................................... 29, 85, 178 Fluorescence ................................ 78, 178 G Gait ....................................................... 18 Gastrointestinal ....................... 15, 29, 178 Gestation............... 13, 20, 21, 23, 55, 182 H Hemorrhage .......................................... 22 Hyperoxia.................................... 123, 136 Hyperplasia ................................... 80, 184 Hypertension............... 13, 22, 29, 60, 179 I Idiopathic....................................... 30, 179 Immaturity ............................................. 14 Immunization .............................. 128, 184 Inflammation .... 11, 17, 21, 22, 30, 48, 75, 80, 180, 184 Insulin...................................... 43, 55, 180 Irritants .................................... 18, 30, 180 L Lavage ............................................ 43, 48 Lesion ........................................... 79, 182 Lip ......................................................... 85 Lipid .............................................. 55, 180 M Malformation ......................................... 85 Membrane............. 19, 20, 21, 61, 79, 181 Mobility.................................................. 43 Molecular ...... 32, 55, 93, 98, 99, 183, 185 Morphine ............................................. 137 Mucosa ......................................... 79, 181 Mucus ............................................. 17, 22 N Nasal..................................................... 18 Neonatal..... 13, 16, 20, 21, 22, 44, 47, 48, 60, 123
Index 189
O Overdose .............................................131 P Paradoxical............................................14 Paralysis ..................................60, 79, 182 Pathogenesis...................................22, 43 Pathophysiology ..............................22, 44 Perinatal ................................................44 Placenta.................................................20 Pneumonia ............................................14 Pneumothorax .......................................22 Postnatal..........................................61, 75 Postoperative.......................................137 Potassium............................................132 Predisposition ........................................44 Prenatal ...........................................19, 21 Prevalence...............................61, 79, 183 Progressive............................................15 Prostate .................................78, 100, 178 Proteins .......20, 28, 30, 55, 78, 130, 132, 174, 177, 179, 181 R Receptor ................................................43 Reflux ....................................................85 Regeneration .........................................23 Respiration .....14, 21, 28, 31, 44, 55, 174, 183
Respiratory ..... 12, 13, 15, 16, 17, 18, 19, 20, 22, 31, 32, 43, 45, 46, 49, 60, 83, 123, 124, 184, 185 Resuscitation ........................................ 49 Retraction.............................................. 14 Riboflavin ............................................ 130 S Sclerosis ..................................... 100, 101 Secretion................... 23, 28, 31, 174, 184 Seizures ........................................ 80, 184 Selenium ....................................... 21, 132 Serum ................................. 124, 128, 184 Surfactant.............. 19, 20, 21, 43, 44, 123 Surgical ................. 88, 140, 178, 181, 182 Symptomatic ........................... 16, 31, 185 Systemic ............................................... 22 T Thermoregulation................................ 130 Thyroxine ............................................ 132 Tone...................................................... 18 Toxicity.................................................. 14 V Vein............................................... 30, 180 Ventilation .. 13, 14, 15, 16, 17, 20, 21, 32, 45, 46, 75, 185 Ventilator................................... 17, 20, 47 Viruses .................................................. 13 W Wheezing .............................................. 18
190 Bronchopulmonary Dysplasia