Paediatric rheumatology: a bright future in the UK and Europe

L. R. Wedderburn, P. Woo1 and R. G. Hull2

Rheumatology Unit, Institute of Child Health, University College London and Great Ormond Street Hospital, 1 Institute of Child Health and The Windeyer Institute of Medical Sciences, University College London and 2 Queen Alexandra Hospital, Portsmouth, UK

Correspondence to: L. R. Wedderburn, Rheumatology Unit, Institute of Child Health, UCL, 30 Guilford Street, London WC1N 1EH, UK. E-mail: l.wedderburn{at}ich.ucl.ac.uk

Paediatric rheumatology has seen major growth and development within the UK in the past few years. An increasing number of centres now offer a specialist service in paediatric rheumatology, and this has been paralleled by recognition of the speciality, both within paediatrics and rheumatology. The speciality is specifically mentioned as an important area in the children's national service framework (NSF) (http://www.dh.gov.uk) and several new NHS consultant posts in the speciality have been established, or are planned. Several ARC-funded senior lecturer posts have been established in the past 5 yr, and this has led to an increasing number of centres which are active in both clinical and basic research. There is an increasing trend to offer training and updates to general paediatricians who share care with specialist centres, creating networks of care, as well as a growing awareness of the particular needs of teenagers and young people with chronic diseases, including arthritis, when they make the transition from paediatric to adult services. Crucially there has also been a growing recognition for trainees in adult rheumatology to gain some experience in paediatric rheumatology so that they are fully equipped to look after these patients after transition.

Within Europe, paediatric rheumatology is a rapidly growing speciality. The Paediatric Rheumatology European Society (PRES; http://www.pres.org.uk/) is a professional society established in 1999 to provide a lead in the education of professionals, provision of clinical guidelines and foster research and collaboration across Europe. PRES runs an annual well-attended congress, which regularly attracts 350–400 attendees and it is also well represented in EULAR. There are working groups on six rare diseases: vasculitis, scleroderma, CINCA, periodic fevers, juvenile dermatomyositis and juvenile systemic lupus erythematosus (SLE). These groups work closely with the Paediatric Rheumatology International Trials Organisation (PRINTO; http://www.printo.it/) to generate internationally agreed classifications of disease, core outcome variables and the design of clinical trials. The establishment of PRINTO in 1996 has proved to be highly effective and has been successful in obtaining three EU grants. Members have concluded a clinical trial on the use of methotrexate (MTX) which has a major clinical message: there is no difference in efficacy between 15 mg/m2 and 30 mg/m2 of parenteral MTX [1]. The network has been involved in multicentre trials sponsored by pharmaceutical companies, with the protocols modified and agreed by the advisory council. Further trials at the planning stage include a clinical trial in juvenile dermatomyositis and a trial to determine optimal time for continuation of MTX once remission is achieved in juvenile idiopathic arthritis (JIA).

Those involved in paediatric rheumatology in the UK have already made significant contributions to these pan-European clinical trials. There are now validated, child-appropriate tools to measure disease activity and improvement in juvenile arthritis (the core outcome variables, COV) [2, 3] as well as quality of life (CHQ) and functional ability (CHAQ) measures [4]. Recent efforts coordinated through PRINTO to establish a core set of criteria for disease activity and damage in childhood SLE and JDM have also led to considerable progress [5, 6]. A patient information website produced by a joint effort of the two organizations (PRINTO and PRES) is now live (www.pediatric-rheumatology.printo.it)

In the UK, the professional body of those involved in clinical and research work within paediatric rheumatology has grown rapidly, and now has over 180 members. This organization has recently changed from a group to a society, and thus its name has changed from the British Paediatric Rheumatology Group (BPRG) to the British Society for Paediatric and Adolescent Rheumatology (BSPAR). A website is now live (http://www.bspar.org.uk/). BSPAR has members from all over the UK and from all disciplines, including nurses, physiotherapists, occupational therapists, physicians (including paediatric rheumatologists, paediatricians, adult rheumatologists who have an interest and others), basic scientists and other interested parties. Membership of BSPAR is open to all interested professionals: for membership information contact Dr A. Jenkins (E-mail: annejenkins{at}doctors.org.uk).

The open subcommittee structure of BSPAR continues, with committees which work on the following areas: clinical affairs, allied health professionals, research, adolescents, trainees, and training. Subcommittee meetings are held at both main BSPAR meetings and for some committees on additional dates in between these. BSPAR meetings are held at the annual RCPCH meeting in York each year, and also at the main BSPAR meeting each autumn. These are lively and varied meetings with both basic science and clinical presentations, reflecting the range of activity within BSPAR. In addition BSPAR holds an annual research day, when current projects, collaborative plans and new proposals for research are discussed, a popular trainee/SpR meeting, hosted by a different centre each year, and an allied health professional meeting usually just prior to the main BSPAR meeting. Further information for activities of AHP within BSPAR can be obtained from J. Scott (JANIS.SCOTT{at}bch.nhs.uk), and further information on research activities can be obtained from L. Wedderburn (l.wedderburn{at}ich.ucl.ac.uk). BSPAR is now also represented within the committee structure of the BSR.

With the advent of the National Institute of Clinical Excellence (NICE) agreement to fund the use of etanercept for children with JIA, a new registry has been established, to collect data on all children receiving biological therapies. Over 200 children with JIA are already being treated with etanercept in the UK, and other biologicals including infliximab and adalimumab are also beginning to be used. The results of a multicentre study of infliximab for severe JIA, comparing 3 mg/kg and 6 mg/kg, will be published shortly, and preliminary data from an open label phase of a randomized control trial of adalimumab in JIA have been presented [7]. The BSPAR Biologics and New Drugs Register is already collecting data on children receiving etanercept, and control data from children on MTX. In the future it is planned to collect data on those taking all biological therapies. The register is managed by an independent committee and administered through a team based at Birmingham University. Data collection started in January 2004. A website detailing all aspects of ethical approval procedure, data collection, and the forms required, is now live (http://www.bsparreg.org/pages/about_registry.asp) and information will also be made available through the BSR website (www.rheumatology.org.uk). For further information please contact Dr C. Cummins, BSPAR Biologics and New Drugs Register at Birmingham Children's Hospital (C.L.CUMMINS.20{at}bham.ac.uk). When children make the transition from paediatric to adolescent or adult services, it is planned that they should stay on this BSPAR register rather than move to the BSR Register of Biological Therapies, since the latter was designed to collect data on those with RA not JIA, and therefore uses different clinical tools. Systems to allow this continued data collection long term are currently being organized.

Since many of the childhood rheumatological conditions are relatively rare, multicentre, collaborative work is of crucial importance to research in this field. BSPAR (formerly BPRG) has been an important route and catalyst for such collaborative studies within the UK, including the BPRG JIA registry, which facilitated numerous genetic studies of childhood arthritis [8–11]. BSPAR centres have recently been involved in a large multicentre study of the process of transition from children's to adult or adolescent services: some of the results of this study have recently been published [12–15]. This collaborative network has also been of great importance to the successful establishment of the Juvenile Dermatomyositis National Registry and Repository (UK and Ireland), which already has a large collection of samples and data on children with juvenile dermatomyositis (JDM) and which are being used for both basic and clinical research [16–18]. The JDM registry has an independent steering committee, and centre coordinators around the UK. Further information about the JDM National Registry and Repository (UK and Ireland) can be obtained from V. Brown (v.brown{at}ich.ucl.ac.uk). Several other large multicentre trials involving BSPAR members and centres are currently under way, including a large prospective study of early childhood arthritis, a trial which aims to establish the optimal treatment to prevent steroid-induced osteoporosis in children receiving steroids, and a study to create a paediatric equivalent of the ‘GALS’ examination.

Paediatric rheumatology in the UK is now a recognized subspeciality and accreditation in the subject can be recognized by its inclusion on the specialist register as a ‘bracketed’ qualification. It is specifically mentioned in the NSF document for children (http://www.dh.gov.uk). Clinicians wishing to train as paediatric rheumatologists will usually come from a paediatric background, and will need to gain a national training number in paediatrics to enable them to receive core training. Paediatric rheumatology experience may be then obtained at a local level (deanery), but for those trainees wishing to become tertiary paediatric rheumatologists it is recommended that they apply for national grid training in paediatric rheumatology. National grid trainees will usually spend 2–3 yr training in at least two different nationally recognized centres allowing them to receive maximum exposure to a full range of rheumatological conditions and their treatment. The grid process is managed by the Royal College of Paediatrics and Child Health via the Paediatric Rheumatology College Specialty Advisory Committee (CSAC). Trainees not wishing to become tertiary paediatric rheumatologists will usually receive at least 12 months training in the speciality, and following further paediatric training will become a consultant paediatrician with a special interest in paediatric rheumatology. With the development of treatment networks it is recognized that there is an increasing need for this type of practitioner in the UK. Trainees from other specialities, e.g. adult rheumatology, can enter training at the level of core paediatrics and European Union paediatric trainees at a level commensurate with their previous experience and training. These ‘rules’ may change when the Postgraduate Medical and Education and Training Board take over control of postgraduate medical education from the Strategic Training Authority. It is also widely recognized that those training to be adult rheumatologists should gain some experience in paediatric rheumatology as part of their training. Further information can be obtained from Dr Clive Ryder, Chair of the BSPAR Education and Training Committee (clive.ryder{at}bch.nhs.uk).

The expansion of paediatric rheumatology as a clinical and academic speciality over the past decade has been supported by the creation of several ARC-funded academic positions within the UK. This factor, combined with a highly collaborative approach to achieving research goals, has made an important contribution to progress. Paediatric and adolescent rheumatology centres have contributed to major trials and studies, providing a growing evidence base to the speciality. Work in the field of service provision during transition from paediatric to adult services for children with JIA has been cited as leading the field of adolescent medicine. In the coming years there are several plans to move collaborative work to a Europe-wide scale to facilitate research in paediatric rheumatology, in particular in the field of the rare paediatric rheumatological diseases such as JDM and the vasculitides.

Thus paediatric rheumatology is a growing and thriving speciality, with an ever increasing number of academic and research-active centres, who are involved in generating a rational evidence-based approach to the treatment and management of rheumatological conditions of children. The future of the speciality is bright, and full of opportunities for the next generation of clinicians and scientists.

Acknowledgments

We acknowledge helpful contributions from Dr C. Ryder and M. J. Scott, and members of BSPAR. The work in the groups of PW and LW is supported by grants from the ARC, Cathal Hayes Trust and SPARKS UK. The BSPAR Biologics and New Drugs Register is funded by Wyeth UK (as required by the licensing authorities and NICE).

The authors have declared no conflicts of interest.

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