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Adolescent Rheumatology - J. McDonagh, et. al., (Informa, 2008) WW PDF

458 Pages·2008·6.64 MB·English
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about the book… Adolescent Rheumatology is the fi rst single-source text that focuses on how adolescent- specifi c aspects impact on rheumatic conditions, and cross references disease-specifi c information from general rheumatology textbooks. Using a generic, developmental approach to make this book unique, the evidence base is referenced with a clinical and practical approach that is adopted to each topic. Written by a list of international experts from a range of disciplines, chapter topics include: • differences in presentation, diagnosis and management between pediatric, adolescent and adult rheumatology care • adolescent health training issues • quality of care in adolescent rheumatology • communication with young people • a full chapter written by young people attending adolescent rheumatology clinics This guide also covers core adolescent health topics and how these factors are impacted by rheumatic disease, which includes: DK9890 Adolescent Rheumatology Adolescent Rheumatology McDonagh – White Rheumatology Adolescent Rheumatology Adolescent Edited by Janet E. McDonagh Patience H. White • adherence • back pain • chronic idiopathic pain • cognitive development • communication • generic health issues • growth and puberty • juvenile idiopathic arthritis • low bone density • peer support • parenting of adolescents • SLE • sports injuries • transitioning to adult health care about the editors... JANET E. MCDONAGH is Clinical Senior Lecturer in Pediatric Rheumatology, Division of Reproductive and Child Health, University of Birmingham and Birmingham Children’s Hospital, UK. She received her medical training from the University of Newcastle, Tyne Medical School, UK. Dr. McDonagh’s current research is focused in transitional care for young people with chronic rheumatic diseases, the long-term outcome of rheumatic diseases developing with onset in childhood, and development of adolescent health training for pediatric and adult providers. She has also written over 60 peer-reviewed articles and 9 book chapters relating to the subject of rheumatology and/or adolescent health. PATIENCE H. WHITE is Professor of Medicine and Pediatrics, George Washington University School of Medicine and Health Sciences Washington, DC, and Chief Public Health Offi cer, Arthritis Foundation, Washington, DC. She received her M.D. from Harvard School of Medicine, Cambridge, Massachusetts, and a M.Ed. from George Washington University School of Education in Washington, DC. Some of her current research involves improving the health of people with arthritis through education, facilitating health system change for quality care for people with arthritis, and improving the long-term outcomes for youth with chronic illnesses and disabilities. She has been a consultant to the youth subcommittee of the US President’s Task Force for Employment of Adults with Disabilities. She created and served for 15 years as the executive director of a transition to independence program for youth with chronic illnesses and disabilities, the Adolescent Employment Readiness Center at Children’s National Medical Center in Washington, DC. She has published over 49 peer-reviewed articles and 35 books and chapters in the fi elds of rheumatology and medical education. Printed in the United States of America Adolescent Rheumatology Edited by Janet E. McDonagh University of Birmingham Birmingham, UK Patience H. White George Washington University School of Medicine and Health Sciences Washington, DC, USA Adolescent Rheumatology Informa Healthcare USA, Inc. 52 Vanderbilt Avenue New York, NY 10017 ª 2008 by Informa Healthcare USA, Inc. Informa Healthcare is an Informa business Cover illustration: cover artwork courtesy of Zsofi Megyeri. No claim to original U.S. Government works Printed in the United States of America on acid-free paper 10 9 8 7 6 5 4 3 2 1 International Standard Book Number-10: 0-8493-9890-8 (Hardcover) International Standard Book Number-13: 978-0-8493-9890-2 (Hardcover) This book contains information obtained from authentic and highly regarded sources. Reprinted material is quoted with permission, and sources are indicated. A wide variety of references are listed. Reasonable efforts have been made to publish reliable data and information, but the author and the publisher cannot assume responsibility for the validity of all materials or for the consequence of their use. No part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying, microfilming, and recording, or in any information storage or retrieval system, without written permission from the publishers. For permission to photocopy or use material electronically from this work, please access www. copyright.com (http://www.copyright.com/) or contact the Copyright Clearance Center, Inc. (CCC) 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400. CCC is a not-for-profit organi- zation that provides licenses and registration for a variety of users. For organizations that have been granted a photocopy license by the CCC, a separate system of payment has been arranged. Trademark Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging-in-Publication Data Adolescent rheumatology/edited by Janet E. McDonagh, Patience H. White. p. ; cm. Includes bibliographical references and index. ISBN-13: 978-0-8493-9890-2 (hb : alk. paper) ISBN-10: 0-8493-9890-8 (hb : alk. paper) 1. Adolescent rheumatology. I. McDonagh, Janet E. II. White, Patience H. [DNLM: 1. Rheumatic Diseases. 2. Adolescent. WE 544 A239 2008] RJ482.R48A33 2008 618.920723–dc22 2007033151 For Corporate Sales and Reprint Permissions call 212-520-2700 or write to: Sales Department, 52 Vanderbilt Avenue, 16th floor, New York, NY 10017. Visit the Informa web site at www.informa.com and the Informa Healthcare Web site at www.informahealthcare.com To Chris, DJ, Niall, Cara, and Nate, and to all those young people who are, have been, and will be in our care as rheumatologists. Preface The exemplars of childhood-onset chronic illnesses usually listed in the adolescent health literature rarely include rheumatic disease despite its having a similar or greater prevalence than other conditions, such as childhood diabetes or cystic fibrosis, and significant reported morbidities. Young people with rheumatic disease and their families therefore richly deserve a book dedicated solely to them and their health care. Adolescent Rheumatology aims to provide a unique clinical approach that concentrates on the adolescent-specific aspects of health and rheumatic disease. We hope it will be useful and informative to the whole multi- disciplinary rheumatology team, pediatric as well as adult, and to the other professionals who come into contact with young people with rheumatic disease. The international group of contributors was specifically selected to reflect the multidisciplinary nature of adolescent rheumatology and to include both pediatric and adult rheumatology professionals and young people themselves. Adolescent Rheumatology starts with chapters that describe the context of being a young person in the twenty-first century, highlighting the impact of rheumatic disease on adolescent development. The interplay of the bio- logical, psychological, and social elements of adolescent development and the interface with peers, family, and the wider community are fundamental to adolescent rheumatology. This importance is reflected in the attention developmental medicine receives throughout Adolescent Rheumatology. The next chapters address specific adolescent issues related to the main conditions in the adolescent rheumatology spectrum, namely juvenile idiopathic arthritis, systemic lupus erythematosus, chronic idiopathic pain syndromes, back pain, sports injuries, and osteoporosis. The following chapters remind us that young people with rheumatic disease are teenagers first and foremost. They explore the generic issues that characterize adolescence, including the “sex, drugs, and rock ‘n’ roll.” Evidence suggests that young people with rheumatic disease are just as exploratory and risk-taking as their healthy peers but face a “double whammy” from both the potential dangers of such behaviors and the effect such behaviors can have on their condition and/or therapy. Chapters addressing parenting and peer issues in the context of rheumatic disease are also included, reflecting the importance of the dynamic nature of relationships with parents and friends throughout adolescence. v Envisioning futures is an important characteristic of adolescent rheumatology whether it be choosing the proactive rather than reactive approach to care or considering the prognosis of rheumatic disease into adulthood. The final chapters of Adolescent Rheumatology are therefore future-focused, addressing the coordination of the transition process as young people move from child- to adult-centered care and, in particular, how the vocational aspects of adolescent development are addressed in this process. The penultimate chapters of the book address two areas rarely included in standard pediatric rheumatology books that are of particular importance in the relatively new world of adolescent rheumatology— training in adolescent health and quality improvement. Although training programs are well established in Australia and North America, they are currently in their relative infancy in Europe. This has obvious implications for the quality of adolescent service provision such specialties as rheumatology. The consultation with and participation of young people is an important quality criteria of young person-friendly rheumatology services. The book’s final chapter has been uniquely written by young people with rheumatic disease from several countries, enabling some of their voices to be heard. Young people truly have the last word! Janet E. McDonagh Patience H. White The editors, Washington, D.C., 2003! vi Preface Acknowledgments As this book is published, I will celebrate 10 years of friendship with and mentorship from my co-editor, Professor Patience H. White. Our collaboration began with my award of a traveling fellowship from the Royal College of Physicians and Surgeons of Glasgow (Scotland) to spend time at the Adolescent Employment Readiness Center at the Children’s National Medical Center in Washington, D.C. At the same time, I wrote up an audit project on behalf of the British Paediatric Rheumatology Group that revealed 82% of units seeing children with rheumatic disease in the United Kingdom had no specific service arrangements for adolescents. So, if you are a rheumatology trainee, beware where you travel during your training and carefully consider the nature of any audit question you ask as they can truly shape your future career! However, the real experts in adolescent rheumatology are the young people themselves. It was therefore with extra delight that the publishers agreed to include a chapter written (Chapter 19) by young people with rheumatic disease. As one 15-year-old girl so eloquently writes: Kids have changed over the years; they don’t sit back and listen anymore. If there is a chance for their point to be heard, they will say it. Teenagers like to have fun and be childish at times but we do like to be treated as adults and given choices, not have choices made for us. —Katie And so it is for Katie and for all the other young people with rheumatic disease to whom this book is dedicated, who continue to be my most effective teachers of adolescent health and who deserve to be listened to and heard! vii

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