• Meredith A Bock, Zachary A Macchi, Krista L Harrison, Maya Katz, Megan Dini, Jacqueline Jones, Roman Ayele, Jean S Kutner, Steven Z Pantilat, Christine Martin, Stefan Sillau, and Benzi Kluger.
• Department of Neurology at University of California, San Francisco, CA, USA.
• Palliat Med. 2024 Feb 1; 38 (2): 240250240-250.

BackgroundPalliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability.AimTo describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.DesignQualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding.Setting/ParticipantsTwenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites.ResultsBenefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team.ConclusionsClinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

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