Consensus-based recommendations for the management of juvenile dermatomyositis

Felicitas Bellutti Enders, Brigitte Bader-Meunier, Eileen Baildam, T. 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. McCann & 1 others Annet van Royen-Kerkhof

Research output: Contribution to journalArticle

49 Citations (Scopus)

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 evidenceinformed consensus process to produce a standard of care for patients with JDM throughout Europe.

Original languageEnglish
JournalAnnals of the Rheumatic Diseases
DOIs
Publication statusAccepted/In press - Aug 11 2016

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Pediatrics
Rheumatic Diseases
Physical therapy
Therapeutics
Physiology
Muscle
Skin
Rheumatology
Standard of Care
Rare Diseases
Juvenile dermatomyositis
Practice Guidelines
Young Adult
Guidelines
Exercise
Morbidity
Physicians
Muscles

ASJC Scopus subject areas

  • Immunology and Allergy
  • Rheumatology
  • Immunology
  • Medicine(all)
  • Biochemistry, Genetics and Molecular Biology(all)

Cite this

Enders, F. B., Bader-Meunier, B., Baildam, E., Constantin, T., Dolezalova, P., Feldman, B. M., ... van Royen-Kerkhof, A. (Accepted/In press). Consensus-based recommendations for the management of juvenile dermatomyositis. Annals of the Rheumatic Diseases. https://doi.org/10.1136/annrheumdis-2016-209247

Consensus-based recommendations for the management of juvenile dermatomyositis. / Enders, Felicitas Bellutti; Bader-Meunier, Brigitte; Baildam, Eileen; Constantin, T.; Dolezalova, Pavla; Feldman, Brian M.; Lahdenne, Pekka; Magnusson, Bo; Nistala, Kiran; Ozen, Seza; Pilkington, Clarissa; Ravelli, Angelo; Russo, Ricardo; Uziel, Yosef; van Brussel, Marco; van der Net, Janjaap; Vastert, Sebastiaan; Wedderburn, Lucy R.; Wulffraat, Nicolaas; McCann, Liza J.; van Royen-Kerkhof, Annet.

In: Annals of the Rheumatic Diseases, 11.08.2016.

Research output: Contribution to journalArticle

Enders, FB, Bader-Meunier, B, Baildam, E, Constantin, T, Dolezalova, P, Feldman, BM, 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, LR, Wulffraat, N, McCann, LJ & van Royen-Kerkhof, A 2016, 'Consensus-based recommendations for the management of juvenile dermatomyositis', Annals of the Rheumatic Diseases. https://doi.org/10.1136/annrheumdis-2016-209247
Enders, Felicitas Bellutti ; Bader-Meunier, Brigitte ; Baildam, Eileen ; Constantin, T. ; Dolezalova, Pavla ; Feldman, Brian M. ; Lahdenne, Pekka ; Magnusson, Bo ; Nistala, Kiran ; Ozen, Seza ; Pilkington, Clarissa ; Ravelli, Angelo ; Russo, Ricardo ; Uziel, Yosef ; van Brussel, Marco ; van der Net, Janjaap ; Vastert, Sebastiaan ; Wedderburn, Lucy R. ; Wulffraat, Nicolaas ; McCann, Liza J. ; van Royen-Kerkhof, Annet. / Consensus-based recommendations for the management of juvenile dermatomyositis. In: Annals of the Rheumatic Diseases. 2016.
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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 evidenceinformed consensus process to produce a standard of care for patients with JDM throughout Europe.",
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AU - Enders, Felicitas Bellutti

AU - Bader-Meunier, Brigitte

AU - Baildam, Eileen

AU - Constantin, T.

AU - Dolezalova, Pavla

AU - Feldman, Brian M.

AU - Lahdenne, Pekka

AU - Magnusson, Bo

AU - Nistala, Kiran

AU - Ozen, Seza

AU - Pilkington, Clarissa

AU - Ravelli, Angelo

AU - Russo, Ricardo

AU - Uziel, Yosef

AU - van Brussel, Marco

AU - van der Net, Janjaap

AU - Vastert, Sebastiaan

AU - Wedderburn, Lucy R.

AU - Wulffraat, Nicolaas

AU - McCann, Liza J.

AU - van Royen-Kerkhof, Annet

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N2 - 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 evidenceinformed consensus process to produce a standard of care for patients with JDM throughout Europe.

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