Background: Multiple sclerosis (MS), a relapsing and progressive demyelinating disease of the central nervous system, results in impaired physical ability and other symptoms. People with MS (PwMS) may experience profound changes in their lifestyle due to disease impact. Social roles are the set of expectations and behaviors for specific positions in ones social groups. Mobility impairment in PwMS is associated with reduction in social role participation (SRP). The effects of cognitive impairment (CI) are often neglected and unappreciated in PwMS.
Objectives: To investigate the association between CI and SRP among PwMS
Methods:: PWMS underwent standardized computerized cognitive testing and completed patient reported outcomes (PRO) in routine care including Neuro-QoL self-reported cognition and Ability to Participate in Social Roles and Activities (APSRA). Logistic regressions were explored comparing both measurements of cognition and the relationship to APSRA. Scores from the APSRA PRO were the outcome for each model. Other potential predictors explored included demographic variables (gender, age, relationship status, and employment status), physical health PROs (patient determined disease steps [PDDS] and MS impact scale [MSIS-29]), and mental health PROs (HADS, meaning and purpose in life, anxiety, and loneliness).
Results: 434 PwMS, 73.5% female, average age 50.5+/- 11.9 years. Low self-reported PRO-cognition decreased the chances of high social role participation in each model. NT-CAB scores were not significant in every model, however one significant model showed that for every 1-point increase in NT-CAB scores, there is a 2.7% increase in the odds of higher APSRA participation. Disability status and unemployment status decreased the chances of APSRA by 85 and 69%, respectively. Age did not affect the chances of higher APSRA. For PDDS, early use of a cane decreased APSRA by 76%. Higher reported MSIS-29 decreased APSRA by 82%. Low sense of meaning and purpose in life, higher depression symptoms, and higher sense of loneliness also decreased chances of higher social role participation.
Conclusions: Multiple factors including decreased cognitive function, physical ability, and mental health outcomes decrease the likelihood of satisfactory social role participation among PwMS. Comprehensive evaluation and appreciation of patient centric disease impact is needed to improve care and outcomes for APSRA. Future research should investigate the causal nature of cognition, mental health outcomes and social role participation. Engaging in social roles participation is important for self-fulfillment and purpose; actions that target this have the potential to improve quality of life among PwMS.