ArticleJournal of neurology2019
End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning.
Article in Journal of neurology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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.
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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
9 citing papers in PubMed.
- Suicidal Ideation and Sleep Disturbances Among People With Huntington Disease: Evidence From the HDBOI Study.Neurology. Clinical practice · 2025Article
- Huntington Disease Health Related Quality of Life, Function and Well Being: The Patient's Perspective.Neurology and therapy · 2025Article
- Palliative care in advanced Huntington's disease: a scoping review.BMC palliative care · 2023Article
- Primary Palliative Care in Huntington's Disease.Movement disorders clinical practice · 2023Article
- Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study.Palliative medicine reports · 2023Article
- Disparities in Palliative Care Utilization Among Hospitalized People With Huntington Disease: A National Cross-Sectional Study.The American journal of hospice & palliative care · 2022Article
- Clinical Decision Trees to Guide Physical Therapy Management of Persons with Huntington's Disease.Journal of Huntington's disease · 2022Review
- Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.Annals of clinical and translational neurology · 2021Article
- Gaining insight into the views of outpatients with Huntington's disease regarding their future and the way they deal with their poor prognosis: a qualitative study.BMC palliative care · 2021Article
Corrections and comments
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Authors and funding
11 authors.
Funding
Abstract
background and purposeHuntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
methodsWe examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
resultsInternal consistency and test-retest reliability were > 0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
conclusionsResults support the clinical utility of the HDQLIFE EOL measures in persons with HD.
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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.