Objective: This study evaluated awareness and perceptions of palliative care among patients with parkinsonism, their caregivers, and physicians in Korea, and identified factors associated with caregiver burden.

Background: Parkinsonism, particularly Parkinson’s disease (PD), is a progressive neurodegenerative disorder with motor and non-motor symptoms that negatively affect quality of life and increase caregiver burden. Neuropalliative care has recently emerged for chronic neurological disorders, including PD

Method: A multicenter, cross-sectional survey was administered to 112 patients with parkinsonism, 110 caregivers, and 61 physicians. Structured questionnaires were used to assess participants’ prior awareness of palliative care, and their attitudes toward neuropalliative approaches. Caregiver burden was measured using validated Korean version of the Parkinson’s Disease Questionnaire-Carer (PDQ-Carer).

Results: Awareness of palliative care varied markedly among groups. Only 31.3% of patients and 27.5% of caregivers were aware of the concept, compared with 90.2% of physicians. Most physicians expressed a positive perception of neuropalliative care. Despite limited awareness, 74.5% of caregivers and 80.4% of patients expressed favorable attitudes toward integrating neuropalliative approaches into PD care. To further explore caregiver burden, caregivers were divided into two groups based on the mean PDQ-Carer score: a low-burden group (score ≤ 34, n = 63) and a high-burden group (score > 34, n = 47). Patients in the high-burden group had longer disease duration, poorer cognitive function, more advanced Hoehn and Yahr stages, and higher levodopa equivalent daily doses (LEDD). In addition, caregiving duration was longer among caregivers with higher burden. Multivariable analysis confirmed the lack of significant associations (all p > 0.8), suggesting that caregiver burden is influenced primarily by disease-related or contextual factors rather than demographic variables.

Conclusion: There is a significant awareness gap in palliative care between physicians and patients/caregivers. The caregiver burden was mainly linked to disease duration as the strongest predictor. Education and structured neuropalliative strategies are needed to support patients with PD and their families

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MDS Abstracts - https://www.mdsabstracts.org/abstract/current-landscape-and-unmet-needs-of-neuropallitive-supportive-care-for-parkinsons-disease-in-korea-a-multicenter-survey-of-patients-caregiver-and-physicians/