Patient Preference Assessment Reveals Disease Aspects Not Covered by Recommended Outcomes in Polymyositis and Dermatomyositis

الملخص EN

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 were rs = −0.67–0.73, correlations with measures of activities of daily living and participation in society were rs = 0.51–0.60 with lower correlations for other outcomes.

Intraclass correlation (ICC) and weighted Kappa (Kw) 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.