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Development of consensus treatment plans for juvenile localized scleroderma: a roadmap toward comparative effectiveness studies in juvenile localized scleroderma
Journal article   Open access   Peer reviewed

Development of consensus treatment plans for juvenile localized scleroderma: a roadmap toward comparative effectiveness studies in juvenile localized scleroderma

Suzanne C Li, Kathryn S Torok, Elena Pope, Fatma Dedeoglu, Sandy Hong, Heidi T Jacobe, C Egla Rabinovich, Ronald M Laxer, Gloria C Higgins, Polly J Ferguson, …
Arthritis care & research (2010), Vol.64(8), pp.1175-1185
08/2012
DOI: 10.1002/acr.21687
PMCID: PMC3724335
PMID: 22505322
url
https://doi.org/10.1002/acr.21687View
Published (Version of record) Open Access

Abstract

Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90% of pediatric rheumatologists responding to a survey (66% of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.
 Practice Guidelines as Topic - standards Randomized Controlled Trials as Topic - methods Humans Male Scleroderma, Localized - diagnosis Treatment Outcome Program Development - standards Scleroderma, Localized - therapy Scleroderma, Systemic - epidemiology Consensus Program Development - methods Randomized Controlled Trials as Topic - standards Young Adult Scleroderma, Localized - epidemiology Scleroderma, Systemic - diagnosis Scleroderma, Systemic - therapy Adolescent Female Methotrexate - administration & dosage Drug Therapy, Combination Methylprednisolone - administration & dosage

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