Understanding the Burden of Caring for Patients with Multiple Sclerosis: A US Caregiver Survey

Background: Due to the disabling nature of multiple sclerosis (MS), most patients rely on caregiver assistance. Given this critical role, a deeper understanding of caregiver burden is needed to inform efforts to alleviate symptoms of MS and reduce caregiver burden.

Objectives: To evaluate the burden of caring for adults with MS from a caregiver perspective.

Methods: Unpaid adult primary caregivers for adults with MS were recruited through an anonymous, cross-sectional online survey in December 2021. Caregiver burden was assessed via standardized instruments (Work Productivity and Activity Impairment [WPAI], Caregiver Burden Inventory [CBI], Hospital Anxiety and Depression Scale [HADS], and Satisfaction with Life Scale [SWLS]) and questions on positive aspects of caregiving.

Results: A total of 300 caregivers (82% male, 86% ≥35 years old, 96% white) of people with MS (40% male, 76% ≥35 years old, 96% white) were surveyed. The mean [median] duration of caregiving was 11.6 [6.0] years. Most caregivers were the spouse or ex-spouse (48%), parent (21%) or child (14%) of the person with MS. The majority of caregivers (90%) were paid employee and on average reported missing 33% of work time due to caregiving. WPAI scores on average reflected 81% work impairment, and 75% regular activity impairment due to the caregiver role. Most caregivers (82%) had a CBI score ≥36 indicating a high burden with risk of burnout, primarily driven by domains related to time spent on caregiving and effects on personal development. Further, the mean anxiety score on the HADS scale (13/21) indicated moderate anxiety levels. The mean HADS depression score (6/21) showed lack of depression among the caregivers, and the mean SWLS score (29/35) indicated a high satisfaction with life. Most caregivers reported their caregiving tasks “quite frequently” or “nearly always” made them feel useful or needed (85%) and fulfilled (73%).

Conclusions: Surveyed caregivers of people with MS reported a high caregiver burden with risk of burnout, moderate anxiety levels, and high productivity impairment due to caregiving responsibilities. Despite this, the majority reported high satisfaction with life and attributed this to feeling useful, needed, and fulfilled due to their caregiving role, suggesting that meaningfulness found in caregiving may offset some burden. Consideration of how to integrate such information may be important for families of these patients as even positive change can be stressful.