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Palliative Care Resource Utilization in Patients with Prion Disease
Gregory Scott Day, Roaa Zayat, Yoav D. Piura, Brian Stephen Appleby, Maisha T. Robinson. Alzheimer s & Dementia, 2025-12-01
Topic: Risk, prevention and care in population studies
172 patients with symptomatic prion disease were identified. 165 (94.8%) patients experienced ≥1 symptom/sign likely to benefit from palliative care, yet only 113 (65.7%) patients accessed palliative care resources during the illness course (hospice care: 39.7%; palliative care consultation: 14.9% inpatient, 6.9% outpatient; both: 3.4%). Lack of referral by the diagnosing clinician was the most common reason (55.9%) patients did not receive palliative care services. Early and predominant language dysfunction, behavioral changes, constipation, and emergency department visits or hospital admissions were independently associated with greater odds of referral for palliative care services. Goals of care (i.e., living environment, nutritional and hospitalization plans) and advanced care plans (i.e., healthcare surrogates, living will, code status, hospice) were more likely to be documented in patients receiving palliative care consultations (88.6% and 93.2%, respectively) versus hospice care alone (7.8% and 14.5%, respectively; p <0.001). More than a third of patients with prion disease did not receive palliative care resources despite a high prevalence of symptoms/signs likely to benefit from palliative care. These findings highlight an opportunity to enhance the care of patients with prion disease by promoting early access to palliative care resources that may support symptom management, enhance caregiver support, and reinforce patient autonomy by clarifying goals of care and advance care planning.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Day, G. S., Zayat, R., Piura, Y. D., Appleby, B. S., & Robinson, M. T. (2025). Palliative Care Resource Utilization in Patients with Prion Disease. Alzheimer s & Dementia. https://doi.org/10.1002/alz70858_102218
Vancouver
Day GS, Zayat R, Piura YD, Appleby BS, Robinson MT. Palliative Care Resource Utilization in Patients with Prion Disease. Alzheimer s & Dementia. 2025. doi:10.1002/alz70858_102218. PMID: 41450285.
BibTeX
@article{day2025-41450285,
author = {Day, Gregory Scott and Zayat, Roaa and Piura, Yoav D. and Appleby, Brian Stephen and Robinson, Maisha T.},
title = {{Palliative Care Resource Utilization in Patients with Prion Disease}},
journal = {Alzheimer s \& Dementia},
year = {2025},
doi = {10.1002/alz70858_102218},
pmid = {41450285},
url = {https://doi.org/10.1002/alz70858_102218}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
Key findings
- 172 patients with symptomatic prion disease were identified. 165 (94.8%) patients experienced ≥1 symptom/sign likely to benefit from palliative care, yet only 113 (65.7%) patients accessed palliative care resources during the illness course (hospice care: 39.7%; palliative care consultation: 14.9% inpatient, 6.9% outpatient; both: 3.4%).
- Lack of referral by the diagnosing clinician was the most common reason (55.9%) patients did not receive palliative care services.
- Early and predominant language dysfunction, behavioral changes, constipation, and emergency department visits or hospital admissions were independently associated with greater odds of referral for palliative care services.
- Goals of care (i.e., living environment, nutritional and hospitalization plans) and advanced care plans (i.e., healthcare surrogates, living will, code status, hospice) were more likely to be documented in patients receiving palliative care consultations (88.6% and 93.2%, respectively) versus hospice care alone (7.8% and 14.5%, respectively; p <0.001).
- More than a third of patients with prion disease did not receive palliative care resources despite a high prevalence of symptoms/signs likely to benefit from palliative care.
Why it matters
This study found that 94.8% of patients with symptomatic prion disease experienced at least one symptom likely to benefit from palliative care, yet only 65.7% accessed palliative care resources, most commonly because the diagnosing clinician did not refer them. It highlights an opportunity to enhance care by promoting early access to palliative care resources that may support symptom management.
Study details
- Participants172
- Effect size94.8%; 65.7%; 39.7%
- Evidence strengthLow
How this study scored 41/100
Published in a peer-reviewed journal. Scored zero for study design and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Alzheimer s & Dementia) |
| Journal's citation record | 2 / 4 | Alzheimer s & Dementia: journal h-index 228 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 2 / 4 | 172 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 1 / 7 | Cited 1 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 1 / 6 | Cited 0.8× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 1 / 6 | Cited by 1 other studies in this library |
| Still being cited | 0 / 4 | Cited 1 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 1 / 4 | Last-listed author Maisha T. Robinson: h-index 13 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | Case Western Reserve University: institution h-index 1,159 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41450285) |
| Free to read | 2 / 2 | Free to read |
| Total | 41 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1002/alz70858_102218
- PubMed: 41450285
- Original source →
- Free full text: Alzheimer s & Dementia →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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