Study Focuses on Caregivers and Their Often Ignored, But Key, Role in Treating MS

A new study from France delves further into the life of multiple sclerosis (MS) caregivers and how they are perceived by MS patients, physicians, and the caregivers themselves. The report, “EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers’ Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a,“ appeared on Aug. 1 in the journal Multiple Sclerosis International.

Caregivers play an important role in the lives and treatment of people with MS, but research does not often focus on their role.

The investigators, led by Cecile Donze of the Functional and Physical Readaptation Medical Service, in the Group Hospital of the Catholic Institute of Lille,  studied patients with relapsing-remitting MS (RRMS) who had been treated with subcutaneous interferon-β-1a (IFN-β-1a) for more than two years.

The team questioned 100 neurologists about their perceptions of the role of caregivers, and gave a study questionnaire to 151 people with RRMS and 151 caregivers.  The researchers designed the questionnaires specifically for individuals in each of the three groups.

People in all groups — caregivers, RRMS patients, and neurologists — felt the caregiver’s most crucial work was in providing moral support and helping the patient fight the disease. Moral support was ranked particularly high by caregivers themselves, given an importance above that expressed by those with MS and neurologists, a difference that was statistically significant. Caregivers also felt that their role in helping patients to fight MS was more important than neurologists did. Access to knowledge about MS and available MS treatments was considered to be less important among those providing support than it was by the people with MS themselves.

“There are many unmet needs in the perception of the role of caregivers for people with MS which need to be addressed to deliver the most effective care package for patients and to support the needs of the support provider,” the authors wrote.

Overall, caregivers play an important role that is valued by patients, physicians, and the caregivers themselves, although exactly what they do is not necessarily agreed upon or always recognized.

The authors emphasize that the caregiving role can be difficult, noting, “Partners have to cope not only with the presence of the disease but also with the unpredictability of its prognosis, which includes the possibility that their partner may become severely physically and cognitively impaired.”

Caregivers can ultimately have a reduced quality of life and an increased risk for mental health problems. Acknowledging the caregivers’ role and providing support can be a critical aspect of MS, one that is not often addressed.