Comment on: Developing standards of care for patients with juvenile idiopathic arthritis

Letters to the Editor

of Clinical Biochemistry and Immunology, Statens Serum Institut, and 4Department of Gynecology and Obstetrics, Rigshospitalet, Copenhagen, Denmark. Accepted 11 May 2010 Correspondence to: Hans Fjeldsøe-Nielsen, Department of Intensive Care, Næstved Hospital, 4700 Næstved, Denmark. E-mail: [email protected]

References 1 Murashima A, Watanabe N, Ozawa N. Etanercept during pregnancy and lactation in a patient with rheumatoid arthritis: drug levels in maternal serum, cord blood, breast milk and the infant’s serum. Ann Rheum Dis 2009;68: 1793–4. 2 Ostensen M, Eigenmann GO. Etanercept in breast milk. J Rheumatol 2004;31:1017–8. 3 Ostensen M, Forger F. Management of RA medications in pregnant patients. Nat Rev Rheumatol 2009;5:382–90. 4 Svenson M, Geborek P, Saxne T, Bendtzen K. Monitoring patients treated with anti-TNF-alpha biopharmaceuticals: assessing serum infliximab and anti-infliximab antibodies. Rheumatology 2007;46:1828–34. 5 Zhou H, Buckwalter M, Boni J et al. Population-based pharmacokinetics of the soluble TNFr etanercept: a clinical study in 43 patients with ankylosing spondylitis compared with post hoc data from patients with rheumatoid arthritis. Int J Clin Pharmacol Ther 2004;42:267–76.

Rheumatology 2010;49:2227–2229 doi:10.1093/rheumatology/keq215 Advance Access publication 22 July 2010

Comment on: Developing standards of care for patients with juvenile idiopathic arthritis SIR, Major recent advances in our understanding and evidence-base for JIA have led to significant progress in improving the treatment and outcome of JIA [1]. Core criteria developed through international consensus facilitate standardization of outcome in JIA [2] that can be useful in clinical practice. Hope has risen significantly for patients and their families as they are able to expect a better and more holistic outcome. This is mirrored in the conviction held by many health care workers and investigators that clinical remission and minimum disease activity are important targets achievable in clinical practice [3]. Success rests on education and training to ensure early recognition [4], rapid access to paediatric specialist services [1] with a holistic approach to care [1, 5], and the advent of biologic therapies has opened a major exciting new era in the management of JIA [6]. The challenge set by Wallace in her recent Editorial: ‘Developing standards of care for patients with JIA: An opportunity to improve care and disseminate knowledge’ [7] is therefore important and timely. Commenting on the recently published ‘Standards of Care for Children and Young People with Juvenile Idiopathic Arthritis’ developed by the British Society for Paediatric and Adolescent Rheumatology (BSPAR) [8], she underlined their strategic importance to be emulated worldwide. At the same time,

she urged that the overriding goal of such Standards must be achieving inactivity of disease status and remission [7]. To attain this, she emphasized the importance of participation in research registries, observational and translational studies, protocol-based (standardized) care and treatment trials, as one of the key ‘philosophical pillars of standards of care for children and young people with JIA’. This approach is exemplified in the recently published joint Arthritis and Musculoskeletal Alliance (ARMA)/ BSPAR ‘Standards of Care for Children and Young People with JIA’ [9], developed in parallel with BSPAR’s initial document [8]. ARMA (www.arma.uk.net), a charitable umbrella body with 34 UK-wide member organizations, provides a powerful collective voice from the arthritis/musculoskeletal community in the UK with strong user involvement. The Standards impact strongly and strategically on policy, clinical service organization and delivery, commissioning for paediatric specialist services and setting UK Standards of Care for patients. The Standards build on existing policy laid down by the Royal College of Paediatrics and Child Health (RCPCH) and indeed they have recently been endorsed as Best Practice for JIA (http://www.rcpch.ac.uk/best practice). Integral to these changes is the UK Medicines of Children Research Network (MCRN)/Arthritis Research UK (formally Arthritis Research Campaign, arc) Paediatric Rheumatology Clinical Studies Group (CSG) (http://www .arthritisresearchuk.org/research/clinical_study_groups/ csg_-_mcrn_paediatric_rheumato.aspx), which is responsible for developing and overseeing a comprehensive portfolio of clinical trials and related studies covering the spectrum of major disease areas in paediatric rheumatology [10]. The CSG has fostered a strong collaborative ethos, integrating development of its Clinical Research Strategy (http://www.arthritisresearchuk.org/docs/CSG/ PRCSGstrategy.pdf) with clinical and training issues, through working closely with BSPAR and the UK musculoskeletal community. Together, their strategic road map has focused their efforts to raise standards of clinical care, enhance the quality of training and promote research in order to increase understanding, improve management and create better outcomes for children with rheumatic diseases. Therefore, the challenges set by Wallace in her Editorial have been significantly addressed in the landmark ARMA/BSPAR Standards of Care published recently [9]. Building on the initial platform [8], the bar has been set high: that ‘children and young people with JIA should have safe, effective, evidence-based care and management strategies’ with an emphasis that clinical remission on and especially off medication are important and realistic targets to achieve [9]. The CSG’s Research Strategy, developed through national, multi-disciplinary consultation including users was underpinned by the question: ‘What are the key clinical research priorities that will change clinical practice in Paediatric Rheumatology (and especially JIA)?’ Importantly, it highlighted a key priority, the fundamental

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TABLE 1 Integration of training and research into JIA standards of carea ‘Children and young people with JIA should have safe, effective, evidence-based care and management strategies’ with an emphasis on clinical remission as an important and realistic target to achieve. ‘All health care practitioners likely to come into contact with persons with JIA require the skills to recognize and support the effective management of the condition’ and that ‘this needs to be addressed in medical education and training programmes’, both undergraduate and postgraduate of all healthcare professionals including doctors. ‘All children and young people should be given an opportunity to be enrolled in a clinical trial or well-conducted clinical study from point of diagnosis onwards, and have the opportunity to contribute towards a consented biobank for subsequent investigation into the cause of their condition’ including ‘pharmacovigilance and drug safety studies’. ‘Children and young people with JIA should be informed about ongoing and future clinical trials and supported to participate in these if they wish and are eligible’. ‘Clinicians should be encouraged to participate in clinical research within their routine clinical practice, in order to help improve future care of children and be provided with the necessary and sufficient support to do this’. a

Standards as set in the joint ARMA/BSPAR Standards of Care for children and young people with JIA [9].

imperative of integrating clinical and research efforts. Included therefore in the ARMA/BSPAR Standards of Care, training and participation in clinical research become intrinsic quality standards that patients and families should expect (Table 1). All children with JIA have the right to equitable access to the highest quality of clinical care, based on current evidence and delivered by appropriately resourced and experienced paediatric and adolescent multi-disciplinary rheumatology teams [9]. As Carol Wallace so well underlined in her Editorial, it is only through the highest quality clinical research and highest standard of holistic care that we will be able to identify and improve the long-term outcomes and health-related quality of life of patients with JIA [7]. These joint ARMA/BSPAR Standards of Care are designed to help and support children and young people with JIA, their families and all professional teams, by providing a statement of the minimum level provision of care required by such children and young people. They emphasize the significant benefits to patients of professional organizations such as BSPAR and a national multidisciplinary clinical academic research community such as the UK MCRN/Arthritis Research UK Paediatric Rheumatology CSG working synergistically and in close collaboration. Above all, they offer a road map for all care providers, governmental agencies, advocacy groups and the general public to continue to work together to achieve the very highest standard of care and disease remission for children and young people with JIA [9].

Michael W. Beresford1, Andrew Gavin Cleary2, Helen E. Foster3, Elizabeth Hutchinson4, Eileen M. Baildam2 and Karen Davies5 on behalf of the UK MCRN/Arthritis Research UK Paediatric Rheumatology Clinical Studies Group and British Society of Paediatric and Adolescent Rheumatology 1

Institute of Child Health, University of Liverpool, Department of Paediatric Rheumatology, Alder Hey Children’s NHS Foundation Trust, Liverpool, 3 Department of Paediatric Rheumatology, Newcastle Hospitals NHS Foundation Trust and Musculoskeletal Research Group, Newcastle University, Newcastle upon Tyne, 4 Department of Paediatric Rheumatology, Queen’s Medical Centre, Nottingham and 5Department of Paediatrics, New Cross Hospital, Wolverhampton, UK Accepted 10 June 2010 Correspondence to: Michael W. Beresford, Institute of Child Health, University of Liverpool, Alder Hey Children’s NHS Foundation Trust, Liverpool L12 2AP, UK. E-mail: [email protected] 2

References

Authors writing on behalf of UK MCRN/Arthritis Research UK Paediatric Rheumatology Clinical Studies Group and British Society of Paediatric and Adolescent Rheumatology

1 Beresford MW, Baildam EM. New advances in the management of juvenile idiopathic arthritis–1: non-biological therapy. Arch Dis Child Educ Pract 2009; 94:144–50. 2 Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Felson DT, Martini A. Preliminary definition of improvement in juvenile arthritis. Arthritis Rheum 1997;40:1202–9. 3 Ringold S, Wallace CA. Measuring clinical response and remission in juvenile idiopathic arthritis. Curr Opin Rheumatol 2007;19:471–6. 4 Foster H, Kimura Y. Ensuring that all paediatricians and rheumatologists recognise significant rheumatic diseases. Best Pract Res Clin Rheumatol 2009;23:625–42. 5 Foster H, Rapley T, May C. Juvenile idiopathic arthritis: improved outcome requires improved access to care. Rheumatology 2010;49:401–3.

Disclosure statement: The authors have declared no conflicts of interest.

6 Beresford MW, Baildam EM. New advances in the management of juvenile idiopathic arthritis–2: the era of biologicals. Arch Dis Child Educ Pract 2009;94:151–6.

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Letters to the Editor

7 Wallace CA. Developing standards of care for patients with juvenile idiopathic arthritis. Rheumatology. Advance Access published 22 March 2010, doi:10.1093/rheumatology/kep459.

9 ARMA/BSPAR Standards of Care for Children and Young People with JIA. London: Arthritis and Musculoskeletal Alliance, 2010. http://www.arma.uk.net/pdfs/Juvenile%20 Idiopathic%20Arthritis.pdf (7 July 2010, date last accessed).

8 Davies K, Cleary G, Foster H, Hutchinson E, Baildam E. BSPAR Standards of Care for children and young people with juvenile idiopathic arthritis. Rheumatology. Advance Access published 19 Feb 2010, doi:10.1093/ rheumatology/kep460.

10 Thornton J, Beresford MW, Clayton P. Improving the evidence base for treatment of juvenile idiopathic arthritis: the challenge and opportunity facing the MCRN/ARC Paediatric Rheumatology Clinical Studies Group. Rheumatology 2008;47:563–6.

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