ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2016
New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
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Who cites it
23 citing papers in PubMed, 35 citations in OpenAlex.
- Suicidal Ideation and Sleep Disturbances Among People With Huntington Disease: Evidence From the HDBOI Study.Neurology. Clinical practice · 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
- Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.Annals of clinical and translational neurology · 2021Article
- Validation of the Revised Collett-Lester Fear of Death Scale in a French Population.Frontiers in psychology · 2021Article
- Assessing meaning & purpose in life: development and validation of an item bank and short forms for the NIH PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020Article
- Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians.Neuropsychological rehabilitation · 2020Article
- Measuring the quality of care in nursing home residents with early-onset neurodegenerative diseases: a scoping review.BMC palliative care · 2020Article
- End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning.Journal of neurology · 2019Article
- Positive Affect and Well-Being in Huntington's Disease Moderates the Association Between Functional Impairment and HRQOL Outcomes.Journal of Huntington's disease · 2019Article
- Understanding patient-reported outcome measures in Huntington disease: at what point is cognitive impairment related to poor measurement reliability?Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Understanding the need for assistance with survey completion in people with Huntington disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Factors Associated With End-of-Life Planning in Huntington Disease.The American journal of hospice & palliative care · 2018Article
- Designation and psychometric properties of the Short Form Postpartum Quality of Life Questionnaire (SF-PQOL): an application of multidimensional item response theory and genetic algorithm.Health promotion perspectives · 2018Article
- A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.Journal of neurology · 2018Article
- Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease.The Journal of neuropsychiatry and clinical neurosciences · 2018Article
- Suicidal Ideation Assessment in Individuals with Premanifest and Manifest Huntington Disease.Journal of Huntington's disease · 2018Article
- Patient-reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures.Movement disorders : official journal of the Movement Disorder Society · 2017Article
- Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease.Journal of Huntington's disease · 2017Article
Corrections and comments
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Authors and funding
14 authors at 8 institutions in 1 country.
Funding
Abstract
purposeHuntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD.
methodsAn EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items.
resultsEFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying.
conclusionThe HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.
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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.