Objective: To describe the personal experiences and perceptions of healthcare practitioners (HCP) involved in the terminal management of people diagnosed with Parkinson’s disease (PD)

Background: Palliative care is receiving a growing interest in PD worldwide. In France, the APO-PALLIA project, started in 2018, highlighted several practice gaps. However, the perceptions, knowledge or experience of HCP involved in the terminal management of people diagnosed with Parkinson’s disease (PD) at a national level was not investigated.

Method: Online questionnaire, accessible from September 19, 2024 to October 31, 2024. Among the 953 responders, 789 HCP (82% females, mean age 45 years old) had taken care of PD patients at a terminal stage, mostly in healthcare facilities (61% nursing homes, 19% teaching hospitals). 44% of responders were nurses, 27% were physicians (50% geriatricians, 34% palliative care specialists, 25% general practitioners and 6% neurologists).

Results: 45% of respondents felt that PD specificities are not considered in patient care, primarily due to a lack of knowledge (only 40% claimed to have a good understanding of the disease and its specific features). 46% considered that care coordination was unsatisfactory. Neurological follow-up was maintained (46%) but suboptimal, discontinued (37%) or irregular (45%).  83% of HCP surveyed said that PD treatments are generally maintained until the end. Patient adherence was highlighted as an issue (56%). The main reason for stopping treatment was unavailability of the oral route (86%). Advance directives for palliative and end-of-life care were discussed (60%), but nearly half of the HCP felt that it was too late. Knowledge, needs and complaints were different between HCP according to their methods of practice (inpatients, home-care services, nursing homes,..) suggesting that one-size-fits-all interventions are unlikely to be successful.

Conclusion: Targeted educational interventions are needed to improve quality of care. Efforts must be made at local, regional and national levels to improve coordination of care and palliative care approaches.

References: Acknowledgments : The authors thank all of the participants, as well as Viavoice for carrying out the analysis

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MDS Abstracts - https://www.mdsabstracts.org/abstract/end-of-life-care-management-in-parkinsons-disease-a-nationwide-survey-of-french-healthcare-practitioners-experiences-and-perceptions/