Category: Parkinsonism, Others
Objective: To evaluate the characteristics and burden of the care-partners of people with Parkinson’s disease (PwP).
Background: The burden of care-partners of PwP is currently not well understood or reported. The PRISM study was a European survey of PwP and their care-partners. PRISM data on the characteristics and burden of the care-partners of PwP are presented here.
Method: PRISM was a descriptive, exploratory, observational study with cross-sectional design, fielded through an online survey developed in collaboration with The Cure Parkinson’s Trust (UK-based advocacy group) and an international scientific committee. Collecting data of PwP and their matched-samples care-partners through online channels may limit results interpretation. Care-partner burden was assessed using the Zarit Burden Inventory (ZBI). Multivariate analysis assessed associations between PwP/care-partner characteristics and ZBI total score.
Results: Between April-July 2019, data were collected from 256 care-partners of PwP from France, Germany, Italy, Portugal, Spain and the UK (Table). The majority of care-partners were female (65%) and partner/spouse to the PwP (82%). Care-partners spent a mean 22.5 hours/week caring for the PwP and the majority (55%) received no assistance from other caregivers. Care-partners reported mild-moderate burden (mean ZBI total score, 26.6); 72% reported that caring for PwP impacted their relationship, and 46% reported an impact on their sexual relationship. Multivariate analysis revealed that female care-partner gender, older PwP age, worse PwP’s Parkinson’s Disease Questionnaire-39 (PDQ-39) mobility score, more PwP’s non-motor symptoms, higher hours of care/week, and being a sibling care-partner were associated with higher care-partner burden (Figure).
Conclusion: PRISM provides valuable information on meaningful factors affecting burden of care-partners in PD.
To cite this abstract in AMA style:
E. Tolosa, J. Ferreira, A. Antonini, A. Lees, T. Foltynie, G. Ebersbach, O. Rascol, J.F Rocha, D. Magalhães, P. Soares-da-Silva. Burden of Care-Partners of People with Parkinson’s Disease: Findings from Parkinson’s Disease Real-World Impact Assessment (PRISM) Study [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/burden-of-care-partners-of-people-with-parkinsons-disease-findings-from-parkinsons-disease-real-world-impact-assessment-prism-study/. Accessed May 15, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/burden-of-care-partners-of-people-with-parkinsons-disease-findings-from-parkinsons-disease-real-world-impact-assessment-prism-study/