Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation

Identification of people with multiple sclerosis (PwMS) with increased risk of restricted participation in social and lifestyle activities (e.g. social outings and pursuing a hobby) could guide the development of interventions supporting sustained participation.

To explore changes in participation in complex and social everyday activities over 10 years in PwMS in relation to multiple sclerosis (MS) severity and to identify predictors of sustained participation.

This study was based on a 10-year follow-up of 264 PwMS living in Stockholm County, Sweden. Ten-year changes in participation in social/lifestyle activities were assessed and compared between PwMS with different MS severity with the Frenchay Activities Index using age- and sex-related normative values. Multiple logistic regression analyses were used to predict sustained participation at 10 years using personal factors, disease severity and functioning as independent variables.

While a majority of people with mild MS demonstrated sustained participation (67%), a minority of PwMS moderately (26%) and severely affected by MS (5%) demonstrated sustained participation. Significant predictors of sustained participation after 10 years were walking speed ⩾1.2 m/s and ⩾32 correct responses on the Symbol Digit Modalities Test.

Our findings accentuate the importance for health services to support mobility and cognition to obtain sustained participation.