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Perceived and physiological strains of societal participation in people with multiple sclerosis: a real-time
Arianne S Gravesteijn1, Maaike Ouwerkerk2, Isaline C J M Eijssen3
1MS Center Amsterdam, Rehabilitation Medicine, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands; Amsterdam Neuroscience research Institute, Neuroinfection & Neuroinflammation, Amsterdam, The Netherlands. a.gravesteijn@amsterdamumc.nl.
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.
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