Multiple Sclerosis and the Ability to Participate in Social Roles and Activities: Disease Impact Beyond Physical Disability

Background: Multiple Sclerosis is a central demyelinating disease that often results in visible motor and coordination or ambulation impact and examination defined visual or sensory disturbance, but often overlooked cognitive impairment. Disease burden and progression in people with Multiple Sclerosis (PwMS) is traditionally measured by reported relapse, EDSS, and MRI change. Disease impact on PwMS’s lifestyle and independence, including participation in social roles and activities has been associated with severe impairment in mobility, with EDSS scores of over 7 and are not typically assessed during routine care visits. Analysis of depression, anxiety and fatigue in relation to disease burden and disability and the impact on social role participation may provide novel insight and early detection for intervention for PwMS.

Objectives: To examine the relationship between patient reported outcomes, Patient Determined Disease Steps (PDDS), Hospital Anxiety and Depression Scale (HADS), Modified Fatigue Impact Scale (MFIS), and Ability to Participate in Social Roles and Activities- Short Form (SRA).

Methods: Retrospective chart review of PwMS that completed patient reported outcomes (PRO) as part of routine care on the same day. PRO’s include Patient Determined Disease Steps (PDDS), Hospital Anxiety and Depression Scale (HADS), Modified Fatigue Impact Scale (MFIS), and Ability to Participate in Social Roles and Activities- Short Form (SRA).

Results: 339 PwMS (73.5% female, average age 50.5+/- 11.9 years). Significant relationships (p<0.05) were identified through regression analysis with Pearson’s correlation coefficient (r) for the following PRO’s scores with SRA: MFIS (r=.75); HADS - depression (r= 0.7); and HADS-anxiety (r=0.5). T-test analysis between grouped PDDS scores identified significant differences between the following groups: SRA: 0-1 vs 2-3, 0-1 vs 4-5, and 0-1 vs 6-7; HADS- anxiety: 0-1 vs 2-3, 0-1 vs 4-5, 0-1 vs 6-7; HADS- depression: 0-1 vs 2-3, 0-1 vs 4-5, 0-1 vs 6-7; MFIS: 0-1 vs 2-3, 0-1 vs 4-5, 0-1 vs 6-7. No significant differences were found between other PDDS groupings for each PRO.

Conclusions: Social roles and activities in PwMS have a strong correlation with MFIS and HADS anxiety and depression scores. MFIS, HADS and SRA all begin to worsen by the time PwMS identify themselves as having moderate disability, not including limitations in walking ability (PDDS group 2-3). These findings indicate that severe impairment in walking ability is not the only factor contributing to limited social activity in PwMS. Fatigue, depression, and anxiety seem to have a large impact on the ability of PwMS to participate in social roles and activities.