Perceived and physiological strains of societal participation in people with multiple sclerosis: a real-time assessment study

Abstract

Objective: To examine the relationship between perceived and physiological strains of real-time societal participation in people with multiple sclerosis. Design: Observational study. Subjects/Patients: 70 people with multiple sclerosis. Methods: Perceived and physiological strain of societal participation (10 participation-at-location and 9 transport domains) were measured in real time using the Whereabouts smartphone app and Fitbit over 7 consecutive days. Longitudinal relationships between perceived (1 not strenuous to 10 most strenuous) and physiological strains (heart rate reserve) were examined using mixed-model analyses. Type of event (participation-at-location or transport) was added as covariate, with further adjustments for fatigue and walking ability. Results: Median perceived strain, summarized for all societal participation domains, varied between 3 and 6 (range: 1–10), whereas physiological strain varied between 18.5% and 33.2% heart rate reserve. Perceived strain (outcome) and physiological strain were not associated (β -0.001, 95%CI -0.008; 0.005, with a 7-day longitudinal correlation coefficient of -0.001). Transport domains were perceived as less strenuous (β -0.80, 95%CI -0.92; -0.68). Higher fatigue levels resulted in higher perceived strain (all societal participation domains) (β 0.05, 95%CI 0.02; 0.08). Conclusion: Societal participation resulted in low-to-moderate perceived and physiological strain. Perceived and physiological strain of societal participation were unrelated and should be considered different constructs in multiple sclerosis.

Keywords

• Activities of daily living
• digital health
• heart rate
• multiple sclerosis
• patient reported outcome measure
• societal participation