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OXFORD MEDICAL PUBLICATIONS

Paediatric
Rheumatology
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Oxford Specialist
Handbooks in
Paediatrics
Paediatric
Rheumatology
Edited by

Helen Foster
MBBS(Hons), MD, Cert Med Ed, DCH, FRCP, FRCPCH
Professor Paediatric Rheumatology
Newcastle University
Honorary Consultant in Paediatric Rheumatology,
Great North Children's Hospital, Newcastle Hospitals
NHS Foundation Trust,
Newcastle upon Tyne, UK

Paul A. Brogan
BSC(Hon), MBChB(Hon), MSC, PhD, MRCPCH, FRCPCH
Senior Lecturer in Paediatric Vasculitis and Honorary
Consultant in Paediatric Rheumatology
UCL Institute of Child Health, and Great Ormond
St Hospital for Children NHS Trust
London, UK

1
1
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It furthers the University’s objective of excellence in research, scholarship,
and education by publishing worldwide. Oxford is a registered trade mark of
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© Oxford University Press 2012
The moral rights of the authors have been asserted
First Edition published in 2012
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a retrieval system, or transmitted, in any form or by any means, without the
prior permission in writing of Oxford University Press, or as expressly permitted
by law, by licence or under terms agreed with the appropriate reprographics
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above should be sent to the Rights Department, Oxford University Press, at the
address above
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and you must impose this same condition on any acquirer
British Library Cataloguing in Publication Data
Data available
Library of Congress Cataloging in Publication Data
Data available
ISBN 978–0–19–959263–0
Printed in Great Britain by
Ashford Colour Press Ltd, Gosport, Hampshire
Oxford University Press makes no representation, express or implied, that the
drug dosages in this book are correct. Readers must therefore always check
the product information and clinical procedures with the most up-to-date
published product information and data sheets provided by the manufacturers
and the most recent codes of conduct and safety regulations. The authors and
the publishers do not accept responsibility or legal liability for any errors in the
text or for the misuse or misapplication of material in this work. Except where
otherwise stated, drug dosages and recommendations are for the non-pregnant
adult who is not breast-feeding
Links to third party websites are provided by Oxford in good faith and
for information only. Oxford disclaims any responsibility for the materials
contained in any third party website referenced in this work.
 v

Preface

The purpose of this book

This handbook aims to help you understand and manage virtually any
paediatric rheumatology condition that may present to you in clinical
practice; it is pocket-sized with a system of bullet points to allow easy
reference to up-to-date evidence-based (where possible) and consensus-
derived opinion. This first edition of the handbook is written amidst a
revolution in clinical genetics and novel therapeutics in the field of mul-
tisystemic inflammatory disease, and captures state-of-the-art clinical
care and best current practice in this context. Essential further reading,
including website links, direct you to sources where more information
can be obtained. The handbook is divided into sections to cover essential
elements of the clinical assessment, the approach to investigations and
management, along with important key facts of knowledge and practical
advice. It includes advice on the care of acute emergencies, chronic disor-
ders, and the spectrum of common conditions seen by all paediatricians
to those seen rarely and usually cared for in specialized paediatric rheu-
matology centres, in collaboration with local units. Many of the chapters
will be applicable to the day-to-day care of patients on a general paediatric
ward or in the outpatient clinic. Acute emergencies that can occur in multi-
system disease and issues arising from the use of potent immunosuppressive
treatments are dealt with in detail.
This handbook will provide guidance for trainees, the general paediatrician,
and the multidisciplinary team specialists (doctors, nurses, physiotherapists,
occupational therapists, podiatrists, and psychologists) who care for chil-
dren with rheumatological conditions. We bring together for the first time
practical guidance for the use of outcome measures, clinical scores of
disease activity, and drug prescribing relevant to paediatric rheumatology.
‘State-of-the-art treatment’ of paediatric rheumatology conditions includes
an ever increasing number of biologic and novel therapies—we provide
practical guidance for the use of such treatments with guidelines, algo-
rithms, and emphasis of the role of the multidisciplinary team to deliver
optimal clinical care.
We are very proud of our extensive authorship, including doctors and
allied health professionals, many of whom are international leaders in
their field. We have successfully engaged with the breadth of the British
Society for Paediatric and Adolescent Rheumatology (BSPAR) community,
with representation from the majority of centres across the UK and have
contributions from all current UK trainees in paediatric rheumatology
working in partnership with consultant supervisors. We also have input
from parents of children with rheumatic disease to emphasize their role
in working together with healthcare professionals—much of what we
do in clinical practice lacks a robust evidence base and we emphasize the
importance of input from consumers on how to involve and fully engage
children and their families with clinical decision-making and research
opportunities to facilitate growth of evidence to inform best practice.
vi PREFACE

This book is a measure of the growing collaboration of paediatric rheuma-

tology both within the UK and with our colleagues further afield to develop
and share knowledge, promote highest quality clinical care, education,
and training to facilitate access to optimal care for all children with rheu-
matic disease.
All profits from the sales of the handbook will be donated to BSPAR.
Helen Foster
Paul A. Brogan
 vii

Foreword 1

UK’s Paediatric Rheumatology Clinical Studies Group

The importance of supporting the very best clinical research to improve
the care of children with rheumatic and musculoskeletal health has been
exemplified by the establishment by the National Institute of Health
Research (NIHR) Medicines for Children Research Network (MCRN)1
and Arthritis Research UK of the MCRN/Arthritis Research UK Paediatric
Rheumatology Clinical Studies Group (CSG).2 This partnership of exper-
tise has supported a major opportunity and development in recent years
of taking forward a comprehensive and long lasting, national clinical
research programme for Paediatric Rheumatology.
Following a detailed, widespread consultation and consensus process,
involving all relevant stakeholders including consumers (see Foreword 2
for comment on consumer input), the CSG’s primary task was to define
the key strategic priorities in paediatric rheumatology with respect to:
‘What are the key clinical research priorities that will change clinical practice
in paediatric rheumatology?’
To achieve this, the CSG:
• Looks to address the gaps in the evidence base in the management
of children and young people with rheumatic or musculoskeletal
conditions.
• Works with all interested parties towards developing a comprehensive
portfolio of key research clinical trials and related studies covering the
entire spectrum of major disease areas in paediatric rheumatology in
the UK.
• Has a strong multidisciplinary membership including: 4 consumer
representatives, clinicians, clinical academics, basic scientists, allied
health professionals, and a pharmacist expert in paediatric formulations.
The CSG’s ‘goal’ is that:
• ‘All children and young people in the UK with a rheumatological
condition may be given the opportunity to be enrolled in a clinical trial
or well-conducted clinical study from point of diagnosis onwards, and
in so doing improve the care and outcome of them and patients with
similar conditions in the future;
• That all children have the option of contributing towards a related, fully
informed and consented Biobank (e.g. DNA and serum) for subsequent
investigation into the cause of their condition.’
To facilitate this process, the CSG has developed (to date) 9 ‘topic specific
groups’ (TSGs) to foster collaboration and support multidisciplinary efforts
to address the key priority areas within paediatric rheumatology, as well as
organizing ad hoc meetings to focus on specific projects.
• Each TSG has members of the CSG as ‘link-persons’ to support
communication and integration of the activities of the TSGs within the
wider CSG research agenda and support structures.
viii FOREWORD 1

• The 9 TSGs are: Auto-inflammatory diseases; Bone Health; Juvenile

Dermatomyositis; Juvenile Idiopathic Arthritis and associated Uveitis;
Juvenile-onset Systemic Lupus Erythematosus; Childhood Scleroderma;
Non-inflammatory, musculoskeletal disorders; Childhood Vasculitides.
In addition, the CSG supports investigators in the following way:
• Welcoming and publicizing expressions of interest in working towards
these priority studies, calling for submission of protocols and proposals
to address these priorities.
• Working with stakeholders and funding bodies and to identify
barriers to research participation and identifying strategies to facilitate
engagement and collaboration in clinical research.
• Supporting protocols where relevant can also include pilot and
feasibility studies to provide proof of concept for definitive studies in
terms of recruitment, data acquisition.
• Encouraging consideration of research ‘add-ons’ to bring value-added
benefit to the children participating in these studies, e.g. pharmacogenetic
and qualitative studies.
• Being advisory to investigators, the MCRN on studies submitted for
NIHR Portfolio adoption, including commercial trials, and to the
Arthritis Research UK and assist with their development.
• Working in close collaboration with other MCRN and Arthritis
Research UK CSGs, as well as other topic specific research networks in
all areas of mutual interest.
References
1 M http://www.mcrn.org.uk.
2 M http://www.arthritisresearchuk.org/research/clinical_study_groups/csg_-_mcrn_paediatric_
rheumato.aspx.
 ix

Foreword 2

Parent and young person involvement in research—a

‘consumer’s’ perspective
The social and psychological aspects of living with any chronic condition
can create a different type of expertise to that of clinicians and researchers.
Consumer involvement is concerned with creating a forum where the
experience, knowledge, and expertise of both healthcare professionals
and the public can come together in an equal partnership to benefit
healthcare research. High-quality research, optimal accrual to research
projects, and improved patient outcomes are dependent on listening to
the voices of children and young people, their families and carers, and
taking account of their experiences, priorities, and perspectives. Engaged
effectively, consumers can contribute to all aspects of clinical research and
clinical service development and including:
• Identifying and prioritizing research ideas that are relevant to clinical
practice.
• Commissioning research to highlight topic areas of concern to patients.
• Designing research studies and associated documentation to enhance
the feasibility of the project by identifying potential barriers to study
participation.
• The management of studies (e.g. as members of steering group).
• Analysis or interpretation of research results to address key issues
relevant to patients.
• Dissemination of research results throughout the lay community.
Key principles for the productive involvement of patients, parents, young
people and families, (referred to as patient and public involvement or PPI),
in partnership for research and clinical service development are discussed
in detail. In summary these are:
• All members of the clinical research group should understand the
benefits of PPI perspective.
• Participation of new PPI members will be facilitated if they are formally
introduced and effort is made to find out about their background/
experiences.
• In advance of meetings, it is important to consider the PPI angle on all
agenda items and identify those which may be of particular interest to
PPI members so they may prepare for discussions.
• Include introductions at the start of a meeting and clarify the meeting
purpose, use plain English, and minimize jargon.
• During the meetings, encourage questions and invite the PPI members
to comment on all issues.
• Consumers’ contributions are often based on their own experiences of
an illness, and wherever possible they should be representative of the
broader community.
• After a meeting it is important to minute contributions made by PPI
members with a follow-up process for feedback.
x FOREWORD 2

Further reading
TwoCan Associates for the UKCRC and NCRI. Patient and public involvement in research
groups – Guidance for Chairs. TwoCan Associates, 2010. M http://www.twocanassociates.
co.uk/pubs.php.
 xi

Foreword 3

I am delighted as the current Convenor of The British Society for

Paediatric and Adolescent Rheumatology (BSPAR) to provide a Foreword
for this Oxford Handbook of Paediatric Rheumatology.
BSPAR has evolved over several decades from the multidisciplinary British
Paediatric Rheumatology Group to achieve its new charitable status, and
is determined and committed to encourage and support clinical care,
research, education, and training in paediatric rheumatology in the UK.
It was in order to help deliver these goals that in 2010 BSPAR achieved
charitable status and I am truly proud of the commitment made by all the
contributing authors of this book to donate any fees due and profits made
to BSPAR.
This handbook has been produced by a dedicated editorial team and with
contributions from a large and truly multidisciplinary authorship. This
highlights the fundamental principle that underpins the ethos of BSPAR—
namely the sense of teamwork that helps individual teams deliver day-to-day
healthcare to children and young people with rheumatologic disorders
and also drives us towards our goal of high-quality research continually
improving the delivery of clinical care.
Throughout our activities it is our patients and their families who directly
benefit from the improved training and dissemination of information that
BSPAR provides to the medical and allied health carers with whom they
come into direct contact. Through education and training, all healthcare
professionals improve the service which they provide to their patients,
and I am sure that this handbook will prove invaluable to many working
in this field.
Dr Gavin Cleary
Convenor
xii

Foreword 4

Paediatric rheumatology training in the UK

In the UK, training in paediatric rheumatology follows completion of
general paediatric training and is overseen by the Royal College of
Paediatrics and Child Health (RCPCH) with a Competency Based
Framework and a process of assessment. Training in paediatric rheuma-
tology is through the national training programme for the training of spe-
cialists in paediatrics (called the ‘Grid’) with competitive entry organized
by RCPCH. This programme of training is a minimum of 2 years, recom-
mended to be in more than one accredited centre, and trainees complete
a programme of formative and summative assessments which are com-
petency-based. Ultimately trainees acquire a Certificate of Completion
of Training to be eligible to be appointed to Consultant posts working
in the National Health Service. Training for general paediatricians with
an interest in rheumatology is also encouraged and such trainees do not
need to be appointed to the Grid but are recommended to have 1 year’s
training in a recognized paediatric rheumatology centre. The Competency
Frameworks for Speciality Paediatrics form the basis of the curriculum
for training and there is a Framework for the Specialist in Paediatric
Rheumatology and also for the general paediatrician with an interest in
rheumatology. Further details are given on the format of training and the
Competency Frameworks are given on the British Society of Paediatric
and Adolescent Rheumatology website (M http://www.bspar.org.uk/
pages/trainees_area_members.asp) and the RCPCH website (M http://
www.rcpch.ac.uk/Training/Competency-Framework).
Increasingly throughout the UK and elsewhere, there are networks of
clinical services working together to deliver paediatric rheumatology care,
often across large geographical areas and encompassing various models of
care with specialist expertise linking with other, and often smaller units.
The role of adult rheumatologists is still very important as part of these
clinical networks, although in many areas the focus of the adult rheuma-
tology team is increasingly towards transitional care. There is a great need
to raise awareness of paediatric rheumatology and the importance of early
and prompt access to appropriate specialist care. There is a shortage of
specialist paediatric rheumatology multidisciplinary teams in the UK and
further afield. The role of shared care between specialist services with
local general paediatric and adult rheumatology teams is increasingly
important so that high-quality clinical care can be delivered and equi-
tably. Such clinical networks require personnel with training and support,
highlighting the need for training, training positions, and a mechanism for
support and teaching resources. This content of this handbook is largely
based on the content of the Competency Frameworks for Paediatric
Rheumatology and aims to address learning needs of paediatric rheuma-
tology trainees, general paediatricians with an interest in rheumatology,
as well as other healthcare professionals working within the specialty and
clinical networks. To date there are no competency frameworks or curricula
 FOREWORD 4 xiii
for allied health professionals working in paediatric rheumatology but
through involvement of nurses and therapists as contributors to the hand-
book, we aim to have addressed some of the learning needs.
Helen Foster
Chair of RCPCH Specialist Advisory Committee for Rheumatology
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