ArticleNeurology2025
Palliative Care Resource Utilization in Patients With Prion Disease.
Article in Neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Prion disease mimicking rapidly progressive Alzheimer disease: case series and systematic review.Journal of neurology · 2026Pooled it
- A randomised, double-blind, placebo-controlled crossover trial on cannabinoid-based medication for behavioural disorders in old patients with severe dementia: the study results.Age and ageing · 2026Trial
- Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.Age and ageing · 2026Review
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Authors and funding
5 authors.
Funding
Abstract
BACKGROUND AND
objectivesTimely access to palliative care, a specialty focusing on improving quality of life for patients with serious medical conditions, is central to patients with prion disease. To optimize evidence-informed utilization of palliative care resources, we systematically evaluated the frequency of clinical features amenable to supportive care, the frequency and patterns of referral to specialty palliative care, and the methods of palliative care delivery in patients with prion disease across a multicenter health care system.
methodsA retrospective review was conducted on electronic medical records of patients diagnosed with definite (neuropathologically or genetically confirmed) or probable prion disease (meeting established clinical criteria for Creutzfeldt-Jakob disease) in inpatient and outpatient settings from January 2012 to August 2023 across the Mayo Clinic enterprise. Symptoms and signs amenable to supportive interventions were systematically abstracted, and associations with utilization of palliative care services were considered (primary outcome). Statistical analyses were performed with SPSS, version 28.0.
resultsOne hundred seventy-two patients with symptomatic prion disease were identified (median age at symptom onset, 65.4 years, range 20.2-85.4; 50.6% female). One hundred sixty-five (94.8%) patients experienced ≥1 symptom or sign amenable to supportive care. One hundred thirteen (65.7%) patients accessed palliative care resources, including hospice care (61.1%), palliative care consultation (12.4%), or both (26.5%). Behavioral changes (odds ratio [OR] 2.70, 95% CI 1.15, 6.32) and constipation (OR 4.92, 95% CI 1.02, 23.60) were independently associated with referral for palliative care services. Emergency department visits (OR 2.29, 95% CI 1.04, 5.03) and hospital admissions (OR 4.32, 95% CI 2.21, 8.47) were also associated with referrals. Hospice care and inpatient palliative care services were accessed more promptly (median 1.0 days, range 0-133.0) than outpatient consultations (median 19.0 days, range 6.0-64.0; DISCUSSION: 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.
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