Objective: To explore the correlation between disease and caregiver burden in MSA.

Background: For patients with Multiple System Atrophy (MSA), the increasing loss of independence imposes a heavy burden on patients and their families. One of the objectives of the MSA Clinical Center at UT Southwestern is to strive to offset disease impact by providing multidisciplinary and comprehensive care to patients and caregivers in single clinic visits.

Methods: We hypothesized that caregiver burden would increase commensurate with disease progression. The Unified Multiple System Atrophy Rating Scale (UMSARS) and the Burden index of Caregivers (BIC), a 10-point survey assessing the degree of caregiver burden, were administered to patients and their family members respectively via a secure web application (REDCap). We analyzed UMSARS and BIC completed during the initial and subsequent clinic visits by 65 subjects and their families. Caregivers were also to identify services of the multidisciplinary clinic that affected caregiver burden.

Results: Disease impairment as captured by UMSARS Parts I and II significantly correlated with the degree of caregiver burden (Pearson correlation coefficients of 0.35 and 0.52, respectively). Whereas patients’ disease scores increased across visits (average slopes of score trajectories for parts I and II of UMSARS of 1.65 [95% CI 0.84, 2.47] and 1.72 [95% CI 1.05, 2.40]), respectively, caregiver burden scores only slightly increased over time (slope of 0.25 [95% CI -1.24, 1.74]). Caregivers identified the opportunity to see all clinicians and support staff in one visit as the primary determinant of benefit from the clinic experience. Amongst elements of the BIC, caregiver distress and pain correlated strongly with decreased health, satisfaction, and time to devote to oneself.

Conclusions: In our cohort, caregiver burden correlated with MSA disease severity, but did not increase proportional to MSA disease severity over time. We postulate that a multidisciplinary care model can help mitigate increasing caregiver burden. It is plausible that the opportunity to see multiple specialists treating MSA in a single visit, obviating the need for several trips to the clinic, may reduce caregiver burden. We intend to continually study the impact of other aspects of integrated clinical care and biopsychosocial interventions on MSA patients and caregivers with the objective of identifying those are most influential in improving quality of life.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiver-burden-in-a-multidisciplinary-msa-clinic/