Objective: To understand patient and care partner perspectives on a community-based outpatient palliative care intervention for patients with Parkinson’s disease and related disorders (PDRD).

Background: PDRD are multisystem, neurodegenerative conditions causing decreased patient quality of life and care partner strain. Under current models of care, people with PDRD (PWP) and their care partners report significant unmet needs. There is growing interest in the integration of palliative care to address symptom burden, psychosocial issues, and spiritual needs in PWD. However, there are no studies to date that evaluate outpatient palliative care approaches integrated into community neurology clinics.

Method: We conducted a descriptive qualitative study with 15 PWP and 9 care partners participating in a multisite, randomized clinical trial of community-based outpatient palliative care between June 2018 and October 2020. Our intervention included primary palliative care training for community providers and team-based palliative care support via telehealth. Participants were interviewed individually or together about their experiences with the intervention. Interviews were conducted by telephone, recorded, and transcribed verbatim. Transcripts were coded and analyzed through team-based inductive analysis to identify emergent themes. Data were managed using Atlas.ti.

Results: Emergent themes included both strengths of the palliative care intervention and areas for improvement. Perceived strengths included 1) benefits of the multidisciplinary team, 2) expanded connection to community-based resources, 3) increased time with care providers, and 4) facilitation of honest conversations about the future. Areas of improvement identified by participants included 1) challenges in care coordination among multiple providers, 2) remaining need for anticipatory guidance about the expected disease course, and 3) redundancy in resources offered.

Conclusion: Results from our qualitative analysis suggest that this palliative care intervention has strengths, can benefit both PWP and care partners, and could be further optimized to improve efficiency and effectiveness.  Understanding the participant experience is crucial in understanding treatment effects, optimizing outpatient applications of neuropalliative care in PDRD, and designing future implementation research.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-and-care-partner-perspectives-on-a-community-based-outpatient-palliative-care-intervention-for-parkinsons-disease-and-related-disorders%e2%80%ac/