title: Patient preference assessment reveals disease aspects not covered by recommended outcomes in polymyositis and dermatomyositis.
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 were r(s) = -0.67-0.73, correlations with measures of activities of daily living and participation in society were r(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.
authors.affiliation: Department of Physical Therapy, Karolinska University Hospital, 171 76 Stockholm, Sweden.
authors.forename: Li
authors.initials: L
authors.lastname: Alemo Munters
authors.forename: Ronald F
authors.initials: RF
authors.lastname: van Vollenhoven
authors.forename: Helene
authors.initials: H
authors.lastname: Alexanderson