Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

Abstract

ImportanceParkinson 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.ObjectiveTo 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 ParticipantsThis 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.InterventionThe intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth.Main Outcomes and MeasuresThe 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.ResultsA 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 RelevancePC 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 RegistrationClinicalTrials.gov Identifier: NCT03076671

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

“…This sheds additional light on the quantitative findings, which found that the intervention improved patient QOL but not care partner burden. 14 Our study was conducted in the US but has implications for care delivery internationally, particularly in resource-limited settings such as those targeted by Project ECHO to increase virtual care access. [27][28][29] What this study adds?…”

“…13 We conducted a randomized clinical trial evaluating a novel intervention consisting of palliative care training for community neurologists along with telemedicine access to team-based, specialist-level palliative care support for patients and families, which showed improvement in patient quality of life and completion of advanced care directives. 14 Here, we present here the results of a qualitative program evaluation embedded in the randomized clinical trial, which was designed to supplement the quantitative results by obtaining narrative descriptions of the experiences of patients and care partners under usual care and the novel intervention. Our research aims were to investigate: (1) unmet needs under standard neurology care, (2) how the intervention addressed the needs of patients and care partners, and (3) the remaining needs under the intervention condition.…”

Error in Additional Contributions

“…In the Original Investigation titled “Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease,” published online November 13, 2023, and in the January 2024 issue, a contributor was not acknowledged. The text was updated to, “We thank Jacquelyn Bainbridge, PharmD (CU Anschutz Skaggs School of Pharmacy and Pharmaceutical Sciences, University of Colorado, Aurora), for her contributions to design of the clinical intervention, study-related care, and data collection.…”