Background: Multiple Sclerosis (MS) is a demyelinating condition that leads to progressive weakness and disability often resulting in patients requiring lifelong care. MS caregivers have been shown to have decreased quality of life, often being responsible not only for working with the care team to delay MS progression but also assisting the patient in their activities of daily living (ADLs). Patients with MS are a particularly vulnerable population in our current pandemic as it is well-recognized that SARS-CoV-2 (COVID-19) particularly affects populations at higher risk including the elderly and individuals with comorbidities, malignancies, autoimmune disease, and immunocompromised patients.
Objectives: The aim of this investigation is to assess if and how the SARS-CoV-2 (COVID-19) pandemic contributed to MS caregiver burden in the Puerto Rican Hispanic population.
Methods: An online survey through Google Forms was distributed through the Facebook page of the Puerto Rico Multiple Sclerosis Foundation (PRMSF) in order to obtain sociodemographic information (i.e. age, gender, housing status, education, income) about the caregivers of MS patients from the PRMSF. The relation to the MS patient, the level of necessity of that patient, and the presence of worry or distress about certain aspects of taking care of that individual were also asked in the survey. Only answers from caregivers of MS patients were included in the study.
Results: A total of 84 surveys were collected throughout the months of April, May, and June of 2020. Approximately, 88% (± 7.08 SD) of caregivers in this cohort reported feelings of increased worry about the patient they were caring for since the pandemic. There was great concern around both access to care, 93.1% (± 3.9 SD), and risk of infection of their patient, 97.2% (± 2.5 SD). In terms of concern surrounding risk of MS treatment, there was a significant difference between educational levels of caregivers (p < 0.05). Caregivers with a higher education level tended to have increased worry about MS treatment than those with lower education level, especially if their annual income was $40,000+.
Conclusions: The SARS-CoV-2 (COVID-19) pandemic has greatly impacted individuals on a global scale. The relationship between education level of caregivers and the anxiety about treatment is consistent with other literature in MS and stroke patient caregivers, suggesting greater supportive services may be needed in this population. As caregivers have a significant influence on MS progression, the importance of determining the level of impact of this disease in caregivers' lives cannot be understated. Consequently, methods for supporting caregivers to reduce their distress may be required so they may support their patients with more ease.
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