Objective: To discern preferences for education and community connection among people affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or multiple system atrophy (MSA).

Background: The unique challenges of PSP, CBD, and MSA necessitate organizations and clinicians to have a nuanced understanding of educational and support resources [1-2]. The CurePSP Patient and Care Partner Support Workgroup (PCPSW) was established in 2022 to assess and fulfill unmet needs around disease education, resource counseling, and early care planning for individuals affected by atypical Parkinsonism.

Method: A 6-item web-based survey was created using Qualtrics and shared through the CurePSP network via email and social media. Questions addressed clinical diagnosis, relationship to the diagnosed individual, educational topics of interest, preferred modes of learning, and community engagement. Free-text responses were also collected to identify any additional concerns or topics not covered in the structured questions.

Results: A total of 223 survey responses were received. A predominant diagnosis distribution was found, with 82% affected by PSP, 13% by CBD, and 5% by MSA. Among participants, 53% identified as spouses/partners, 22% as diagnosed individuals, and 21% as children of diagnosed persons. The top areas of educational interest included coping strategies (80%), long-term care planning (45%), and end-of-life care (32%). There was equal interest in support group offerings (30%), clinical trial participation (29%), role of rehab therapies (29%), and medication management (27%). Preferred learning methods included webinars (48%), fact sheets/booklets (45%), and support groups (42%). Community connection preferences highlighted the significance of regional support groups (51%), individual connections with peer supporters (37%), and social media (35%). Free text responses further demonstrated an interest in coping, research, disease progression and management.

Conclusion: The PCPSW will utilize the insights from this qualitative survey to advise CurePSP on the development of targeted resources ranging from education, research participation, and support services tailored to the expressed needs of care partners and people living with PSP, CBD, and MSA. Specifically, our group has started to create a resource focused on mood mental health to be shared with the CurePSP Centers of Care and beyond.

References: [1] G. Respondek, D. Breslow, C. Amirghiasvand, B. Ghosh, B. Bergmans, L. van Wyk, T. Irfan, R. Dossin, C. Vanderavero. The lived experiences of people with progressive supranuclear palsy and their caregivers. Neurol Ther. 12 (2023) 229-247. doi:10.1007/s40120-022-00420-1

[2] S. Kalampokini, A. Hommel, S. Lorenzl, J.J. Ferreira, W.G. Meissner, P. Odin, B.R. Bloem, R. Dodel, A.E. Schrag. Caregiver burden in late-stage parkinsonism and its associations. J Geriatr Psychiatry Neurol. 35 (2022) 110-120. doi: 10.1177/0891988720968263

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MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-patient-and-care-partner-educational-preferences-in-atypical-parkinsonism/