Palliative Care Resource Utilization in Patients With Prion Disease
Despite the terminal nature of prion disease and the near universal prevalence of symptoms and signs amenable to supportive care, more than one-third of patients with prion disease did not access specialty palliative care resources. These findings highlight an opportunity to promote early access to palliative care resources that support symptom management and reinforce patient autonomy by clarifying goals of care and advance care planning for patients with prion disease.
Authors
- Roaa Zayat (ORCID: https://orcid.org/0009-0007-7026-2099)
- Maisha T. Robinson (ORCID: https://orcid.org/0000-0002-0776-4439)
- Yoav D. Piura (ORCID: https://orcid.org/0000-0003-1004-4560)
- Gregory Scott Day (ORCID: https://orcid.org/0000-0001-5133-5538)
- Brian S. Appleby (ORCID: https://orcid.org/0000-0003-2275-3292)
Institutions
- University Hospitals of Cleveland (US)
- Jacksonville College (US)
- WinnMed (US)
- Mayo Clinic in Florida (US)
Publication Details
- Journal
- Neurology
- Published
- 2025-09-02
- DOI
- https://doi.org/10.1212/wnl.0000000000214076
- Primary Topic
- Childhood Cancer Survivors' Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 0.00