Symptom Management Among Multiple Sclerosis Care Partners in Canada.

Abstract

Background: Managing the heterogeneity and unpredictability of multiple sclerosis (MS) symptoms can be difficult for MS care partners. This study aimed to characterize the symptoms managed by MS care partners, recognize relationships between symptom management difficulty and other aspects of the caregiving role, and identify supplemental sources of care-giving support used by care partners.

Methods: A Canadian cohort of MS care partners completed an online survey capturing care-partner characteristics, care-recipient symptoms, care-partner difficulty with managing symptoms, and sources of caregiving assistance. Descriptive analysis, analysis of variance, and χ² tests were used to compare differences in care-partner characteristics by symptom management difficulty groups, defined as low (<4 symptoms), medium (5-7 symptoms), and high difficulty (>7 symptoms).

Results: Care partners to individuals with MS (N = 475) reported a median of 8 symptoms (IQR = 4) experienced by their care-recipients. The most frequent symptoms reported were fatigue (89.1%), weakness (87.2%), and depression (81.9%). Care partners reported a median of 6 (IQR = 5) symptoms being somewhat or very difficult to manage. Balance or mobility impairments (20.3%), depression (14.3%), and vision difficulties (13.1%) were most frequently reported as very difficult to manage. Assisting with activities of daily living (P < .001) and time spent caregiving (P = .035) varied significantly between symptom management difficulty groups. Additional help available was reported by 77.5%, 17.8%, and 41.6% of care partners reporting low, medium, and high symptom management difficulty, respectively (P < .001).

Conclusions: Care partners of individuals with MS report difficulty in managing multiple, variable symptoms and often have no additional help. These findings suggest that MS care partners experience difficulty managing many diverse symptoms and may benefit from additional support.