Background In 2012, a European initiative called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile dermatomyositis (JDM) is a rare disease within the group of paediatric rheumatic diseases (PRDs) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians' experience. Consequently, treatment regimens differ throughout Europe.
Objectives To provide recommendations for diagnosis and treatment of JDM.
Methods Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was constituted, consisting of 19 experienced paediatric rheumatologists and 2 experts in paediatric exercise physiology and physical therapy, mainly from Europe. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using nominal group technique. Recommendations were accepted if >80% agreement was reached.
Results In total, 7 overarching principles, 33 recommendations on diagnosis and 19 recommendations on therapy were accepted with >80% agreement among experts. Topics covered include assessment of skin, muscle and major organ involvement and suggested treatment pathways.
Conclusions The SHARE initiative aims to identify best practices for treatment of patients suffering from PRD. Within this remit, recommendations for the diagnosis and treatment of JDM have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JDM throughout Europe.
- Autoimmune Diseases
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Handling editor Tore K Kvien
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Contributors LJM and AvR-K are senior authors. NW and SV designed the SHARE initiative. FBE performed the systematic literature review, supervised by LMC and ARK. Validity assessment of selected papers was done by FBE, BB-M, BMF, CP, AR, MvB, JvdN, SV, LRW, NW, LJMC and AvR-K. Recommendations were formulated by FBE, LJMC and AvR-K. The expert committee consisted of FBE, BB-M, EB, TC, PD, BMF, PL, BM, KN, CP, SO, AvR-K, RR, YU, JvdN, NW, LRW, MvB, SV, LJMC and AvR-K; they completed the online surveys and/or participated in the subsequent consensus meetings. AR assisted in the preparation of the two live consensus meetings with FBE, LJMC, AvR-K and facilitated the consensus procedure using nominal group technique. FBE, AvR-K and LJM wrote the manuscript, with contribution and approval of all co-authors.
Funding This project was supported by a grant from European Agency for Health and Consumers (EAHC), grant number 20111202.
Competing interests FBE—Valeria e Ettore Bossi Foundation. EB—speaker bureau for Roche/ Chugai, Ad Board for Abbvie and Pfizer. BMF—consultant for Novartis, Pfizer, BMS. PL—consultant for BMS, Pfizer. SO—consultant for Novartis, speaker bureau of SOBI. PD—consultant for Roche, speaker bureau for Pfizer, Novartis, grant support from SOBI, Novartis, Abbvie, Roche, Pfizer, Medac. AR—grant/research support from Pfizer and The Myositis Association; consultant for Novartis, Roche; speaker bureau of Abbvie, Novartis, Pfizer, Roche. YU—consultant for Novartis, speaker bureau of Abbvie, Neopharm, Novartis, Roche. NW—grant/research support from EAHC, Abbvie, GSK, Roche, consultant for Genzyme, Novartis, Pfizer, Roche
Provenance and peer review Not commissioned; externally peer reviewed.
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