Reach of Palliative Care in Parkinson Disease: Progress and Gaps After a National Team-Based Implementation Project

The value of palliative care (PC) is increasingly recognized in the care of people with Parkinson disease (PWP) and their carepartners. While clinical trials demonstrate PC improves quality of life for PWP and carepartners, little is known about the impact of PC on their experiences of receiving care in real-world settings. We designed and implemented a national outpatient PC project at the Parkinson's Foundation US-based Centers of Excellence (COEs) between August 2021 and November 2023. We aimed to assess preimplementation vs postimplementation changes in perceptions and experiences of PWP and carepartners related to the receipt of PC.

Between September and October 2023, an electronic survey was distributed through the Parkinson's Foundation to PWP and carepartners who received care at US-based COEs and non-COEs. Survey questions assessed knowledge, perceptions, and experiences related to PC. Preimplementation and postimplementation data were compared.

Surveys were distributed to 12,946 PWP and carepartners; 1,778 participants (1,247 PWP, 531 carepartners) responded. At COEs, PWP reported significant increases in non-motor symptom (NMS) assessment (76.5%-86.7%, p = 0.001) and pain management (45.1%-57.6%, p = 0.01). Emotional and spiritual needs were addressed more frequently (33.3%-44.7%, p = 0.01). Advance care planning (ACP) discussions rose from 18.7% to 27.9% (PWP, p = 0.01) and ACP documentation from 8% to 18.1% (p = 0.001). At non-COEs, similar gains were observed in NMS assessment (65.5%-73.7%, p < 0.001), pain management (31.5%-45.1%, p < 0.001), emotional/spiritual discussions (25.3%-33.6%, p = 0.001), and assessment of carepartner needs (21.6%-29.7%, p = 0.002). Carepartners reported similar improvements. Communication ratings and knowledge of PC were high (>85%) and stable across surveys.

PWP and carepartners' perceptions and experiences of care were stronger postimplementation in many, but not all, aspects of PC. As changes were seen in both COEs and non-COEs, it is unclear to what degree findings relate to direct or indirect impacts of team-based implementation of PC vs other broader temporal trends, such as community-level increased awareness of PC. Findings highlight progress and gaps, underscoring the need for continued efforts for cultural and systemic changes to integrate PC into routine PD care.