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

458 Pages·2008·6.64 MB·English

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)

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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
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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