Patient Preference Assessment Reveals Disease Aspects Not Covered by Recommended Outcomes in Polymyositis and Dermatomyositis. (30th March 2011)

• Record Type: Journal Article
• Authors: Alemo Munters, Li; van Vollenhoven, Ronald F.; Alexanderson, Helene
• Other Names: Huber A. M. Academic Editor.; Tchetina E. Academic Editor.
• Is Part Of: ISRN rheumatology. Volume 2011(2011)
• Publication Date: 2011-03-30
• Subjects: Rheumatology -- Periodicals; Rheumatic Diseases; Rheumatology; Rheumatology; Periodicals; 616.723
• DOI: 10.5402/2011/463124
• Languages: English
• ISSNs: 2090-5467

Abstract

Abstract : Objectives . Polymyositis (PM) and dermatomyositis (DM) are characterized by impaired muscle function with a majority of patients developing sustained disability. The aim of this study was to evaluate the patient's individual priorities (patient preference) of disabilities most important to improve in PM/DM using the MacMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), to correlate the MACTAR to myositis outcomes and to evaluate its test-retest reliability. Methods . Twenty-eight patients with PM/DM performed recommended outcomes as well as the MACTAR, which was performed twice with one week apart. Results . Sexual activity, walking, biking, social activities, and sleep constituted the predominating disabilities. Seventy-two and 33% of the identified disabilities were not covered by items of the Health Assessment Questionnaire and the Myositis Activities Profile. Correlations between the MACTAR and health-related quality of life measures werer s = −0.67–0.73, correlations with measures of activities of daily living and participation in society werer s = 0.51–0.60 with lower correlations for other outcomes. Intraclass correlation (ICC) and weighted Kappa (K w ) coefficients were 0.83 and 0.68, respectively, for test-retest reliability of the MACTAR. Conclusions . The MACTAR interview had promising measurement properties and identified patient preference disabilities in PM/DM that were not covered by recommended outcomes.