There is increasing recognition of the utility of palliative care throughout the course of PD. However, there has been limited characterization of disease features that should prompt consideration of palliative care services in the population.

To identify symptoms associated with poor quality of life, critical events associated with advanced disease, and barriers to palliative care utilization among patients with Parkinson disease (PD). 

We created and pre-tested an online needs assessment survey and partnered with the Davis Phinney Foundation to recruit a national cohort with self-reported Hoehn and Yahr Stage II-V PD. We assessed demographics, clinical characteristics, quality of life, symptoms, critical events, and opinions of palliative care using pre-existing instruments and novel survey items. We used logistic regressions to evaluate which uncontrolled symptoms were associated with poor quality of life and χ² tests to determine which critical events were associated with advanced disease. We provided a brief explanation of the services provided by palliative care and assessed pre- and post-education willingness to see a specialist. We also characterized barriers to pursuing palliative care intervention.

A total of 612 individuals (mean age 70.1; 49.8% women) completed the survey. Uncontrolled symptoms most highly associated with poor quality of life were confusion (OR 4.25, p<0.01), depression (OR 3.61, p<0.01), and hallucinations (OR 3.34, p<0.01). Wheelchair dependence, ≥3 falls over 6 months, and hospitalization for a fall were most associated with advanced disease. Only 2.1% of respondents reported previously seeing a palliative care specialist. Baseline willingness to see a specialist was 14.9%, which nearly doubled to 27.6% following the brief explanation. Common identified barriers included limited provider availability, cost/insurance coverage, and stigma.

Despite high symptom burden among those with PD, utilization of palliative care services is limited. Stigma may partially drive this limited use, and patient education may improve utilization in the population.