Integrating tele-palliative care for atypical Parkinsonian disorders: Lessons learned from a pilot program

Abstract

Introduction

As evidence supporting palliative care (PC) via tele-medicine for neurologic patients increases, it is important to determine the best integration methods across various healthcare settings and patient populations to optimize outcomes. Given the rising demand for PC in chronic neurodegenerative diseases like Atypical Parkinsonian Disorders (APDs), it is imperative to explore different models of PC delivery for feasibility and effectiveness.

Methods

Participants with APDs and their care partners at the University of California, San Francisco (UCSF) and Johns Hopkins University (JHU) received 2 virtual telemedicine PC sessions (at baseline and 6 months). Adherence and feasibility-related outcomes were assessed using a satisfaction survey developed by the investigators, using a five-point Likert scale, administered at baseline and 6 months. Additionally, participants’ quality of life (QoL), mood, functional abilities, and care partner burden were assessed at baseline and 6-month follow-up virtual visits.

Results

There was a 100 % attendance rate among participants and their care partners at both sites. Satisfaction levels regarding visit convenience were > 78 % for both visits at UCSF and reached 100 % at JHU. No significant differences were observed between baseline and 6-month assessments at both sites in QoL, mood, or caregiver burden. However, there was a significant decrease in functional abilities during the second visit (6 months) at JHU.

Conclusion

These results support the integration and expansion of telemedicine PC services to address the evolving needs of individuals with APDs and their care partners, offering a viable solution to enhance access to PC in diverse healthcare settings.