Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Abstract

Objective. To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods. Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Results. Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.

Conclusions. Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.

Keywords:

• Multiple sclerosis
• health-related quality of life
• caregiver

Acknowledgment

The authors thank Dr. Nicholas LaRocca, Director of the Health Care Delivery and Policy Research program of the National MS Society, for his assistance with this research. The Lone Star Chapter of the NMSS recruited volunteers to pre-test the care giver survey questionnaire. The Central New England Chapter and the Ozark Branch of the Mid America Chapter of the NMSS recruited volunteers to participate in focus groups for this study. In addition, the authors are grateful to the people with MS who identified their care givers and the care givers who participated in the focus groups, the pre-test of the survey questionnaire, and the telephone interviews. Without their cooperation and input, this study could not have been completed.

Declaration of interest

This research was supported by a contract from the Health Care Delivery and Policy Research Program of the National MS Society (HC 0043).