Group-Based Advance Care Planning for Parkinson’s Spectrum Disorders: A Retrospective Evaluation of an Integrated Outpatient Model

Abstract

Background

Parkinson’s Spectrum Disorders are progressive conditions associated with motor, cognitive, and communication decline, making early advance care planning (ACP) essential. However, ACP discussions are often delayed, limiting patient involvement in decision-making. Group-based ACP interventions may offer a scalable and supportive format to facilitate ACP discussions, but their effectiveness in Parkinson’s Spectrum Disorders remains unexamined. This study evaluates the impact of a group-based ACP workshop integrated into an outpatient education program for individuals with Parkinson’s Spectrum Disorders. The primary outcome was change in participant understanding and engagement in ACP. Secondary and tertiary outcomes included workshop acceptability and perceived impact from the referring providers, respectively.

Methods

A retrospective mixed-methods evaluation was conducted. Participants attended a single-session ACP workshop within a multidisciplinary outpatient rehabilitation program. Anonymous surveys were completed before, immediately after, and 3 months post-workshop. Quantitative responses were analyzed using ordinal logistic regression. Free-text responses underwent qualitative analysis.

Results

Forty survey responses were received across all time points. Participants reported greater comfort with ACP and improved understanding of substitute decision-making. Readiness to assign a power of attorney for personal care (POA-PC) increased significantly (P = 0.005) post-workshop. At 3-month follow-up, 70% of respondents had new ACP discussions with a healthcare provider, and 40% had newly appointed a POA-PC. Participants valued the relaxed, non-clinical group setting and requested more actionable resources.

Conclusions

Group-based ACP workshops represent a feasible and acceptable model for Parkinson’s Spectrum Disorders. Observed improvements in ACP understanding and engagement, sustained at 3 months, support further exploration of group-based formats for ACP in neurodegenerative conditions.