ArticleJournal of pain and symptom management2022
Hospice Care Experiences Among Decedents With Huntington's Disease.
Article in Journal of pain and symptom management, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.
What it found
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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.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed, 1 synthesis or guideline pooled it, 2 citations in OpenAlex.
- Current knowledge of Huntington's disease-like 2 genetic testing, clinical presentation, and patient experiences: A systematic review.Journal of Huntington's disease · 2026Pooled it
- The Impact of Hospice Care on the Prognosis, Quality of Life, and Emotional Well-being of Patients With Chronic Heart Failure.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2025Trial
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
contextLittle is known about the hospice care experiences of those with Huntington's Disease (HD).
objectivesOur objective is to provide the first national characterization of hospice care quality for patients with HD and their families.
methodsWe used national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data to examine caregiver-reported experiences of hospice care. We analyzed data from 550 caregivers of patients with HD and 1,098,819 caregivers of patients without HD who died January 2016-June 2019 while receiving hospice care from 3,845 hospices nationwide. Outcomes (on a 0-100 scale) were eight publicly-reported quality of care measures, and four individual survey items about receiving help for specific symptoms. Analyses were propensity-score weighted and adjusted for patient and caregiver characteristics.
resultsExperiences of care among patients with HD were similar to or better than for patients without HD. Across all hospice and care settings, the only significant difference was for Providing Emotional, and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P < 0.01). However, patients with HD more often received care in settings with worse experiences for all patients; within the same hospice and same setting of care, measure scores were significantly higher for patients with HD compared to those without HD (2.3-4.6 points higher on a 0-100 scale) for all measures except Getting Hospice Care Training.
conclusionOur findings highlight the benefits of hospice care for those with HD and their families and may be useful for patients with HD when making decisions regarding options for end-of-life care.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.