Tamara McKenzie, PsyD; Mary Elizabeth Quig, PhD; Tuula Tyry, PhD; Ruth AnnMarrie, MD, PhD; Gary Cutter, PhD; Edward Shearin, PhD; Kamau Johnson, PhD;James Simsarian, MD

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We aimed to investigate the impact of caregiver stress on the emotional well-being and physical health of the MS care partner utilizing the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry.

Materials and Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment.

Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were male (825, 61.9%) and on average (SD) 51.1 (11.2) years old. The average (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. As compared to male care partners, female care partners reported higher levels of burden and stress, and more medication use for stress/anxiety, and mood disorders. Male care partners were more likely to report physical complaints. Care partners of people with primary progressive MS reported greater perceived burden than did partners for secondary progressive MS and relapsing-remitting MS. Over 40% of care partners (559/1288) had missed work over the past year due to caregiving responsibilities.

Conclusions: Care partners of people with MS have substantial physical and psychological health concerns, and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse impacts of caregiving and evaluate positive aspects of the role.