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. 2023 Jul;30(7):1843-1853.
doi: 10.1111/ene.15790. Epub 2023 Mar 30.

Self-reported restrictions in different life domains and associated factors among people with multiple sclerosis in Sweden

Fitsum Sebsibe Teni  1 , Alejandra Machado  1 , Chantelle Murley  1 , Katharina Fink  2 , Hanna Gyllensten  3 , Jessica Dervish  1 , Jan Hillert  2 , Emilie Friberg  1
Affiliations

Self-reported restrictions in different life domains and associated factors among people with multiple sclerosis in Sweden

Fitsum Sebsibe Teni et al. Eur J Neurol. 2023 Jul.

Abstract

Background and purpose: The heterogeneous symptoms of multiple sclerosis (MS) can considerably impact the lives of people with MS (PwMS). The aim of this study was to describe the extent of restrictions in different life domains that PwMS experience in relation to their symptoms and level of disability.

Methods: A cross-sectional survey was conducted among working-age PwMS in Sweden. The 4052 participants who answered the questions on restrictions in work and private life domains (family, leisure activities, and contact with friends/acquaintances) were included. Predictors of restrictions in the four domains were determined through multinomial logistic regression.

Results: Approximately one-third of the PwMS reported no restrictions in the domains of work (35.7%), family (38.7%), leisure activities (31.1%) or contact with friends/acquaintances (40.3%), the remaining participants reported moderate to severe restrictions. Tiredness/fatigue was the most commonly reported most-limiting symptom (49.5%). PwMS with Expanded Disability Status Scale (EDSS) scores of zero reported restrictions in life domains ranging from 39.6% (friends/acquaintances) to 45.7% (leisure activities). Age, sex, education, type of living area, MS type, type of most-limiting symptom, and EDSS score predicted restrictions in work and private life domains.

Conclusions: Most PwMS reported similar levels of restrictions in both their work and private lives. Restrictions in these life domains were also reported by PwMS with low disability levels (EDSS = 0) and were often associated with invisible symptoms such as fatigue. Even in a contemporary MS cohort, close to 90% of PwMS report limitations due to MS.

Keywords: family; fatigue; friends; leisure; work.

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