Advance care plans in parkinsonism: cross-sectional study within a randomised controlled trial

Objectives The importance of advance care planning in parkinsonism is increasingly recognised. Existing evidence shows plans are infrequent in this population. Little is known about the details of the plans themselves and whether patient factors predict advance care planning practices. This study aimed to describe advance care planning in people with parkinsonism enrolled in the PRoactive Integrated Management and Empowerment (PRIME-UK) trial, and identify factors associated with advance care planning. Methods This is a cross-sectional substudy of 211 participants within the PRIME-UK randomised controlled trial, a single-centre trial that randomised 214 people with parkinsonism to receive either a novel model of care (PRIME-Parkinson care) or usual care (ISRCTN trial ID 16783200). The presence of a treatment escalation plan was used as a measure of advance care planning. Results At the time of this study, a quarter (n=53, 25%) of participants had a treatment escalation plan. 45% of plans were created during an emergency hospital admission. 100 participants had appointed a lasting power of attorney (LPA). In adjusted regression models, increasing parkinsonism severity (OR 2.2, 95% CI 1.55 to 3.12), increasing frailty (OR 3.69, 95% CI 1.42 to 9.63) and increasing comorbidity (OR 2.51, 95% CI 1.53 to 4.14) were associated with having a treatment escalation plan. Conclusions Treatment escalation plans for people with parkinsonism are frequently completed in advanced disease during emergency hospital admission. Many individuals are appointing LPAs, suggesting an interest in future planning that could be further supported by clinicians. Future research should explore interventions to improve proactive outpatient advance care planning. Trial registration number 16783200