Assessing Aspects of Burden in Caregivers of Patients With Multiple Sclerosis

When people with multiple sclerosis (MS) require caregiving due to disability, the majority of that care is provided by informal caregivers, such as spouses or relatives, which makes it important to understand how caregivers are impacted by this work.

A new study in Patient Preference and Adherence assessed the structure and validity of the Caregiver Strain Index (CSI), a brief self-assessment tool that measures the perceived level of burden on caregivers in MS.

“Understanding caregiver burden may be crucial for carrying out specific intervention strategies to reduce burden and improve caregiver health,” the authors explained.

They studied adults with relapsing-remitting and primary progressive MS in 19 MS units in Spain. At clinical appointments, caregivers completed the CSI questionnaire, and the researchers performed a post hoc analysis to assess the performance of the CSI.

A total of 72 MS caregivers were included in the study and the prevalence of a high level of strain was 23.6%. The items on the CSI that received the highest endorsement from caregivers were financial strain (54.2%), care recipient change upsetting (45.8%), inconvenience (38.9%), emotional adjustments (30.6%), and work adjustments (30.6%).

The researchers determined that the CSI score correlated with the disability of the person with MS—the 19 caregivers of patients with MS who had more disability had a higher mean CSI score than the caregivers of patients with low levels of disability.

Some of the limitations that the authors highlighted was the fact that the 72 caregivers studied were caring for people with MS who were clinically stable and had low physical disability, which means the results may not be generalizable to all caregivers. In addition, the study did not assess sociodemographic characteristics of caregivers, which might have impacted their answers on the CSI.

Ultimately, the authors concluded that the CSI is a useful tool to assess burden in caregivers of patients with MS.

“Multidisciplinary teams managing MS may be able to utilize this questionnaire to determine which interventions are most needed and which dimension of caregiver burden to target,” they wrote.

Reference

García-Domínguez JM, Martínez-Ginés ML, Carmona O, et al; W-IMPACT Clinical Investigators. Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire. Patient Prefer Adherence. 2019;13:101-106. doi: 10.2147/PPA.S180863.