Consensus-based recommendations for the management of juvenile dermatomyositis

Felicitas Bellutti Enders, Brigitte Bader-Meunier, Eileen Baildam, Tamas Constantin, Pavla Dolezalova, Brian M Feldman, Pekka Lahdenne, Bo Magnusson, Kiran Nistala, Seza Ozen, Clarissa Pilkington, Angelo Ravelli, Ricardo Russo, Yosef Uziel, Marco van Brussel, Janjaap van der Net, Sebastiaan Vastert, Lucy R Wedderburn, Nicolaas Wulffraat, Liza J McCannAnnet van Royen-Kerkhof

Research output: Contribution to journalReview article

Abstract

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.

Original languageEnglish
Pages (from-to)329-340
Number of pages12
JournalAnnals of the Rheumatic Diseases
Volume76
Issue number2
DOIs
Publication statusPublished - Feb 2017

Keywords

  • Cyclosporine
  • Dermatomyositis
  • Europe
  • Evidence-Based Medicine
  • Exercise Therapy
  • Glucocorticoids
  • Humans
  • Immunosuppressive Agents
  • Methotrexate
  • Mycophenolic Acid
  • Patient Care Team
  • Practice Guidelines as Topic
  • Prednisolone
  • Rituximab
  • Societies, Medical
  • Sunscreening Agents
  • Consensus Development Conference
  • Journal Article
  • Review

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  • Cite this

    Enders, F. B., Bader-Meunier, B., Baildam, E., Constantin, T., Dolezalova, P., Feldman, B. M., Lahdenne, P., Magnusson, B., Nistala, K., Ozen, S., Pilkington, C., Ravelli, A., Russo, R., Uziel, Y., van Brussel, M., van der Net, J., Vastert, S., Wedderburn, L. R., Wulffraat, N., ... van Royen-Kerkhof, A. (2017). Consensus-based recommendations for the management of juvenile dermatomyositis. Annals of the Rheumatic Diseases, 76(2), 329-340. https://doi.org/10.1136/annrheumdis-2016-209247