Profiling Symptom Management in Multiple Sclerosis Care-Partners: A Canadian Cross-Sectional Study

Background: Multiple sclerosis (MS) can manifest in individuals through an assortment of physical and cognitive symptoms that interfere with daily life. As their symptoms progress, persons with MS often rely on informal care-partners (i.e., family and friends) to assist in symptom management. However, managing the heterogeneity and unpredictability of MS symptoms can lead to burden and distress among MS care-partners.

Objectives: The objectives of this study were to characterize the level of difficulty in managing care-recipient symptoms, as reported by MS care-partners, and how symptom management related to time spent caregiving and providing assistance with activities of daily living (ADLs).

Methods: MS care-partners across Canada completed a cross-sectional online survey capturing caregiving characteristics, care-recipient symptoms, level of difficulty in managing care-recipient symptoms (out of 16 possible symptoms), and sources of additional caregiving assistance. The Caregiving Tasks in MS Scale (CTiMSS) was used to measure assistance care-partners provided to care-recipients with ADLs. Descriptive analysis, ANOVA, and chi square tests were used to compare differences in symptom management burden by caregiving characteristics.

Results: MS care-partners (n=475) reported a median (IQR) of 8 (4) symptoms experienced by their care-recipient. The most frequent symptoms reported were fatigue (89.1%), muscle weakness (87.2%), and depression (81.9%). Care-partners reported experiencing difficulty in managing a median (IQR) of 6 (5) symptoms. When asked to rate symptom management difficulty, balance or mobility impairments (20.3%), depressive symptoms (14.3%), and difficulties seeing (13.1%) were most frequently reported as “very difficult” to manage. Care-partners reporting a high symptom management burden (difficulty with managing ≥8 symptoms) assisted with significantly more activities of daily living than care-partners reporting lower symptom burden (difficulty managing ≤8 symptoms; p<0.001). This difference was not evident when examining time spent providing care (p=.098). Approximately half (51.7%) of care-partners reporting high symptom burden received additional assistance.

Conclusions: These findings suggest that MS care-partners encounter difficulties managing multiple MS-related symptoms afflicting care-recipients. Of these, depressive symptoms and mobility problems were most frequently reported as difficult to manage for care-partners. Despite assisting more frequently with activities of daily living, care-partners reporting high symptom burden did not more frequently receive assistance with their caregiving role. These findings suggest that MS care-partners who experience difficulty managing many symptoms, particularly depressive symptoms and mobility issues, may benefit from additional supports.