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

Area of Science:

• Neurology
• Geriatrics
• Palliative Care

Background:

• Palliative care (PC) via telemedicine is increasingly important for neurologic patients.
• Demand for PC in chronic neurodegenerative diseases like Atypical Parkinsonian Disorders (APDs) is rising.
• Exploring effective PC delivery models for APDs is crucial.

Purpose of the Study:

• To assess the feasibility and effectiveness of telemedicine PC for patients with APDs.
• To evaluate patient and care partner satisfaction with virtual PC sessions.
• To measure changes in quality of life, mood, functional abilities, and caregiver burden.

Main Methods:

• Two virtual telemedicine PC sessions were provided to participants with APDs and their care partners.
• Assessments included investigator-developed satisfaction surveys (Likert scale) and validated measures.
• Outcomes measured at baseline and 6-month follow-up included quality of life, mood, functional abilities, and caregiver burden.

Main Results:

• 100% attendance rate for participants and care partners at both study sites.
• High satisfaction with visit convenience (>78% at UCSF, 100% at JHU).
• No significant changes in quality of life, mood, or caregiver burden; a decrease in functional abilities was noted at JHU.

Conclusions:

• Telemedicine PC is a feasible and effective model for patients with APDs.
• These services can enhance access to palliative care for individuals with neurodegenerative diseases.
• Expansion of telemedicine PC is supported for addressing evolving patient needs.