LB01
The Experience of Care Partners of Patients with MS: Outcomes from the Global vsMS™ Survey
Objectives: To assess the experience of caregivers of patients with MS.
Methods: A 20-minute electronic survey was completed by participants from 7 countries.
Results: Of 580 caregivers, 279 (48.1%) were spouses of patients with MS. Duration of caregiving was >5 years for 61.1% of caregivers. 50.5% reported spending >20 h/wk helping the person for whom they care (>40 h/wk: 20.7%); 51.9% reported that the amount of care provided had increased over 2 years. Although caregivers reported being inspired by the person they care for (89.5%), happy to be part of the patient’s care (94.3%), proud of being a caregiver (92.4%), and relieved to see the person with MS benefitting from their care (93.3%), at first MS diagnosis, 53.8% had not expected the person to need daily caregiving, and 43.1% worried about financial security. Caregivers reported helping the patient with a variety of tasks, including managing household chores (92.6%), running errands (92.9%), attending doctor visits (86.0%), administering medication (61.7%), and providing emotional support (97.8%). 46.7% reported their lives being significantly altered since caregiving began, and 44.6% felt that caring for someone with MS was the greatest challenge in their lives. Some caregivers reported feeling depressed (44.7%), physically tired (50.3%), less ambitious than before caregiving (33.4%), frustrated that people close to them do not understand challenges they face (43.8%), stressed by balancing caring and trying to meet other responsibilities (36.4%), and 49.8% felt that they have no time for themselves. 87.6% worried about increasing disability in the person with MS, although 54.8% reported not discussing this fear to avoid upsetting the person with MS. Caregivers reported feeling worried about their ability to provide adequate care (57.4%) and wished they could do more (89.8%).
Conclusions: Although most caregivers were happy to be involved in the patient’s care, they reported negative impacts on multiple aspects of their lives, including emotional and physical well-being, financial security, and daily responsibilities. These data highlight the burden on caregivers of patients with MS.