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Abstract Details

Perceptions of Neurologists and Other Healthcare Professionals Regarding Palliative Care for Parkinson Disease: A Qualitative Study
Movement Disorders
P10 - Poster Session 10 (8:00 AM-9:00 AM)
16-005

Post-implementation assessment of healthcare professionals’ (HCP) perceptions of (a) palliative care (PC) for persons with Parkinson’s disease (PWP), (b) the implementation process, and (c) needs for sustainment.

We designed and implemented a national project on team-based PC for PWP at the Parkinson’s Foundation US Centers of Excellence.

We used a qualitative descriptive research design. Between April and July 2023, we conducted semi-structured interviews and a focus group with HCP (n=19, including 8 neurologists). Data were collected until there was evidence of saturation. Interviews were audio-recorded, transcribed, coded, and analyzed.
Study participants (15 female) included physicians, nurses, and social workers. Five themes were identified: 1) Palliative care is the net that catches you when you need it. Participants felt that a PC approach helped them be proactive in managing PWP; 2) The palliative care pillars provided structure that facilitated the development of systems. Having an operational definition of PC for PWP eased misconceptions of PC being only for end of life and provided a framework for timely conversations; 3) Patients’ emotional and spiritual needs, care-partner support, and future planning take time to establish. Systemic barriers and lack of time impede necessary discussions; 4) Building connections with palliative care and hospice specialists strengthened timely referrals. Despite discomfort with hospice discussions, establishing connections with institutional and community PC specialists and hospice facilitated referrals; and 5) Palliative care champions need leadership support, ongoing education, and resources for long-term sustainability. For long term sustainment, PC champions want leadership buy-in and continued PC education.

HCPs see the value of a PC approach to PD care. Long term sustainment requires leadership and system support, access to resources as well as ongoing education for PC champions.
Authors/Disclosures
Umer Akbar, MD
PRESENTER 		Dr. Akbar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for LANGaware.
Sandhya Seshadri, PhD The institution of Dr. Seshadri has received research support from NIH.
Megan Dini, MA (The Parkinson's Foundation) Mrs. Dini has received personal compensation for serving as an employee of Parkinson's Foundation .
Nicole A. Lessard, RN (Parkinson’s Foundation) Ms. Yarab has nothing to disclose.
Benzi Kluger, MD, FAAN (University of Rochester) Dr. Kluger has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for International Neuropalliative Care Society. Dr. Kluger has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Annals of Palliative Medicine. The institution of Dr. Kluger has received research support from NIH. The institution of Dr. Kluger has received research support from PCORI.