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

Publication ,  Journal Article
Tory, H; Zurakowski, D; Kim, S; CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators,
Published in: Pediatr Rheumatol Online J
January 15, 2020

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.

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Published In

Pediatr Rheumatol Online J

DOI

EISSN

1546-0096

Publication Date

January 15, 2020

Volume

18

Issue

1

Start / End Page

5

Location

England

Related Subject Headings

  • Severity of Illness Index
  • Physicians
  • Patients
  • Male
  • Logistic Models
  • Humans
  • Female
  • Family
  • Dissent and Disputes
  • Dermatomyositis
 

Citation

APA
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ICMJE
MLA
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Tory, H., Zurakowski, D., Kim, S., & CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators, . (2020). Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry. Pediatr Rheumatol Online J, 18(1), 5. https://doi.org/10.1186/s12969-020-0402-x
Tory, Heather, David Zurakowski, Susan Kim, and Susan CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators. “Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.Pediatr Rheumatol Online J 18, no. 1 (January 15, 2020): 5. https://doi.org/10.1186/s12969-020-0402-x.
Tory H, Zurakowski D, Kim S, CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators. Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry. Pediatr Rheumatol Online J. 2020 Jan 15;18(1):5.
Tory, Heather, et al. “Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.Pediatr Rheumatol Online J, vol. 18, no. 1, Jan. 2020, p. 5. Pubmed, doi:10.1186/s12969-020-0402-x.
Tory H, Zurakowski D, Kim S, CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators. Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry. Pediatr Rheumatol Online J. 2020 Jan 15;18(1):5.
Journal cover image

Published In

Pediatr Rheumatol Online J

DOI

EISSN

1546-0096

Publication Date

January 15, 2020

Volume

18

Issue

1

Start / End Page

5

Location

England

Related Subject Headings

  • Severity of Illness Index
  • Physicians
  • Patients
  • Male
  • Logistic Models
  • Humans
  • Female
  • Family
  • Dissent and Disputes
  • Dermatomyositis