Palliative Care Resource Utilization in Patients With Prion Disease.

Area of Science:

• Neurology
• Palliative Care Medicine
• Medical Ethics

Background:

• Prion diseases are rare, fatal neurodegenerative disorders requiring specialized care.
• Palliative care significantly enhances quality of life for patients with serious illnesses.
• Timely integration of palliative care is essential for prion disease management.

Purpose of the Study:

• To assess the frequency of supportive care needs in prion disease patients.
• To analyze referral patterns and delivery methods of palliative care.
• To identify factors influencing palliative care access in prion disease.

Main Methods:

• Retrospective review of electronic medical records (2012-2023) across a multicenter health system.
• Inclusion of patients with definite or probable prion disease (e.g., Creutzfeldt-Jakob disease).
• Systematic abstraction of symptoms amenable to supportive care and palliative care utilization.

Main Results:

• 172 patients with symptomatic prion disease were analyzed; 94.8% had symptoms/signs needing supportive care.
• 65.7% accessed palliative care, primarily hospice (61.1%).
• Behavioral changes, constipation, ED visits, and hospital admissions correlated with palliative care referrals.

Conclusions:

• Despite near-universal symptom burden, over a third of prion disease patients lacked specialty palliative care access.
• Opportunities exist to enhance early palliative care integration for symptom control and advance care planning.
• Promoting timely access supports patient autonomy and improves care quality.