Category: Parkinsonism, Atypical: PSP, CBD
Objective: To understand the determinants of burden among people caring for individuals diagnosed with progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), or multiple system atrophy (MSA).
Background: Individuals with PSP, CBS, and MSA require increasing assistance with activities of daily living due to symptom progression over the course of their disease [1-3]. Higher care partner burden is associated with poorer outcomes in neurodegenerative diseases [4,5]. At this time, data on care partner burden in atypical parkinsonian syndromes are lacking.
Method: Cross-sectional demographic and clinical data were analyzed for PSP, CBS and MSA patients and their care partners who attended a specialty multidisciplinary clinic at two movement disorders centers designated as CurePSP Centers of Care. The Zarit Burden Interview (ZBI) was used to assess care partner strain and needs. Univariable and multivariable regression analyses were performed to evaluate determinants of care partner burden. Variables included age at time of appointment, years since symptom onset, patient and care partner gender, and clinical diagnosis. Total ZBI scores were used as the dependent variable. Analyses considered cohorts at each center separately and data were also combined in the final analysis.
Results: Across the two centers, 139 ZBI questionnaires were analyzed. Cohorts at both centers were similar across variables. Age at symptom onset across all diagnoses was associated with a trend toward higher care partner burden in the unadjusted model (p = 0.05). Female patient gender and female care partner gender were independently associated with higher total care partner burden across all diagnoses. MSA-P was significantly associated with lower care partner burden in the adjusted model and the overall MSA cohort had a trend level association with lower care partner burden (p = 0.08). No other significant associations with care partner burden were found in the adjusted model.
Conclusion: Care partner burden is an important and understudied challenge in atypical parkinsonian syndromes. Female gender of both patients and care partners was associated with higher reported care partner burden across all diagnoses, while MSA diagnosis was associated with lower care partner burden in our study. These findings may aid healthcare professionals in identifying at-risk care partners of PSP, CBS, and MSA and offering additional and tailored support for patients and families.
References:  Kellermair L, Fuchs A, Eggers C, et al. Caregiver strain in progressive supranuclear palsy and corticobasal syndromes. J Neural Transm 2021; 128: 1611–1621.
 Langford B, Zhou Y, Miyasaki J. Multiple system atrophy caregivers’ experience: A mixed methods study. Canadian Journal of Neurological Sciences 2023; 50(1): 49-59.
 Respondek G, Breslow D, Amirghiasvand C, et al. The lived experiences of people with progressive supranuclear palsy and their caregivers. Neurol Ther 2023; 12, 229–247.
 Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: Cross-sectional and longitudinal patient correlates. The American Journal of Geriatric Psychiatry 2010; 18(10): 917-927.
 Mosley PE, Moodie R, Dissanayaka N. Caregiver burden in Parkinson disease: A critical review of recent literature. J Geriatr Psychiatry Neurol. 2017; 30(5): 235-252.
To cite this abstract in AMA style:M. Ivancic, J. Shurer, M. Schmidt, V. Nesspor, M. Li, Y. Lin, R. Xu, G. Schumock, M. Sklerov, A. Pantelyat. Determinants of care partner burden in atypical parkinsonian syndromes [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/determinants-of-care-partner-burden-in-atypical-parkinsonian-syndromes/. Accessed September 27, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/determinants-of-care-partner-burden-in-atypical-parkinsonian-syndromes/