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- Title
Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.
- Authors
Kluger, Benzi M.; Katz, Maya; Galifianakis, Nicholas B.; Pantilat, Steven Z.; Hauser, Joshua M.; Khan, Ryan; Friedman, Cari; Vaughan, Christina L.; Goto, Yuika; Long, S. Judith; Martin, Christine S.; Dini, Megan; McQueen, R. Brett; Palmer, Laura; Fairclough, Diane; Seeberger, Lauren C.; Sillau, Stefan H.; Kutner, Jean S.
- Abstract
Key Points: Question: Can palliative care (PC) training for neurologists and remote access to a PC team improve outcomes for persons with Parkinson disease and related disorders (PDRD) receiving care in community settings? Findings: In this pragmatic trial of 359 patients with PDRD and 300 caregivers, patients undergoing the PC intervention had better quality of life at 6 months (co–primary outcome) and were more likely to complete advance directives. No significant differences were found in caregiver burden at 6 months (co–primary outcome) or other outcomes. Meaning: PC education of community neurologists and remote provision of team-based PC is feasible and may improve select outcomes in PDRD. This pragmatic trial evaluates whether palliative care training for neurologists and remote access to a palliative care team can improve outcomes in patients with Parkinson disease and related disorders in community settings. Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. Design, Setting, and Participants: This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. Intervention: The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. Main Outcomes and Measures: The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. Results: A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, −0.63 to 0.82] vs −0.88 [95% CI, −1.62 to −0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P =.03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, −0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, −0.62 to 1.90; P =.32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P =.008). There were no differences in other outcomes. Conclusions and Relevance: PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. Trial Registration: ClinicalTrials.gov Identifier: NCT03076671
- Publication
JAMA Neurology, 2024, Vol 81, Issue 1, p39
- ISSN
2168-6149
- Publication type
Article
- DOI
10.1001/jamaneurol.2023.4260