Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.

Journal Article (Journal Article)

BACKGROUND: Global disease activity scores (gVAS) capture patient or family (PF) and physician (MD) assessments of disease. This study sought to measure discordance between PF and MD global activity scores in juvenile dermatomyositis (JDM), and determine factors associated with discordance. METHODS: Patients with JDM were included from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry (N = 563). PF and MD gVAS were assessed for discordance, defined as a ≥ 2-point difference. Factors associated with discordant gVAS were compared in univariate analysis. Multivariable regression analysis was used to identify predictors of discordance. RESULTS: Almost 40% (N = 219) of PF and MD gVAS were discordant. Among discordant scores, 68% of PF rated gVAS ≥2-points above MD, which was associated with calcinosis and lower quality of life and functional scores (p < 0.01). MD gVAS rated ≥2-points above PF in 32%, which was associated with abnormal laboratory results, weakness, arthritis, rash and other skin changes, and current intravenous steroid treatment (p < 0.01). In multivariate analysis, predictors for higher PF rating included calcinosis, lower quality of life and functional scores, while predictors for higher MD rating included rash, calcinosis, nailfold capillaroscopy changes, and current intravenous steroid treatment. CONCLUSIONS: Discordance between PF and MD gVAS was common in this JDM cohort. Overall, higher PF rating was associated with poorer patient reported outcome (PRO) scores, while higher MD rating was associated with poorer objective measures. This suggests PF and MD assessments of gVAS may be measuring different aspects of disease, highlighting the importance of integrating PROs into clinical practice and research.

Full Text

Duke Authors

Cited Authors

  • Tory, H; Zurakowski, D; Kim, S; CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators,

Published Date

  • January 15, 2020

Published In

Volume / Issue

  • 18 / 1

Start / End Page

  • 5 -

PubMed ID

  • 31941511

Pubmed Central ID

  • PMC6964044

Electronic International Standard Serial Number (EISSN)

  • 1546-0096

Digital Object Identifier (DOI)

  • 10.1186/s12969-020-0402-x


  • eng

Conference Location

  • England