Assessment of the Burden of Multiple Sclerosis on Family Caregivers by Patient Disability Severity

Multiple sclerosis (MS) is a disabling disease that may require caregiving. The objective of this study is to assess the burden of MS on family caregivers by patient disability severity. This study used data from Adelphi Multiple Sclerosis Disease Specific Programme, a cross-sectional survey with caregiver-reported data in the United States and Europe between 2013 and 2016. Patient disability was categorized by the expanded disability status scale (EDSS) score as no disability (0-1.5), mild (2-3.5), moderate (4-5.5) and severe disability (>=6). The impact of MS on caregiver’s quality of life (measured by CAREQOL-MS), self-rated health, time spent on caregiving, and employment status was compared across disability severity using trend test. Approximately 35% of MS patients reported having caregivers and 76% of the caregivers were family members. A total of 2,463 family caregivers of MS patients were included: 769 (31%) for patients of no disability, 651 (26%) for mild, 537 (22%) for moderate, and 506 (21%) for severe disability. The total CAREQOL-MS scores (higher means worse) in no disability, mild, moderate, and severe disability groups were 47, 56, 65, and 71, respectively (p<0.01). Caregivers of higher patient disability level were more likely to report moderate to severe impact of providing MS care on their own health (14%, 22%, 35%, 42%, p<0.01). As the patient disability increased, caregivers spent more hours per day providing care (1.9, 3.1, 4.2, 5.9, p<0.01) and more employed caregivers reported work productivity as impacted(29%, 45%, 63%, 71%, p<0.01). The majority of reported caregivers were family members. Caregivers of MS patients with more severe disability had poorer quality of life, self-rated health, and productivity. Controlling or delaying disability progression in MS patients is essential to reduce the family caregiver burden.