ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2016
HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties.
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, 34 citations in OpenAlex.
- Integrating Digital and Ancillary Technologies in the Modern Clinical Evaluation of Chorea.Movement disorders clinical practice · 2025Article
- Profiling Swallowing Safety and Physiology in People With Huntington's Disease.Neurogastroenterology and motility · 2025Article
- Further development in measuring communicative participation: identifying items to extend the applicability of the communicative participation item bank.Journal of patient-reported outcomes · 2023Review
- 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
- Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- 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
- Management of dysphagia in Huntington's disease: a descriptive review.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2020Review
- Understanding domains that influence perceived stigma in individuals with Huntington disease.Rehabilitation psychology · 2020Article
- HDQLIFE and neuro-QoL physical function measures: Responsiveness in persons with huntington's disease.Movement disorders : official journal of the Movement Disorder Society · 2020Article
- How different aspects of motor dysfunction influence day-to-day function in huntington's disease.Movement disorders : official journal of the Movement Disorder Society · 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
- Factors Associated With End-of-Life Planning in Huntington Disease.The American journal of hospice & palliative care · 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
- Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease.The Journal of neuropsychiatry and clinical neurosciences · 2018Article
- Article
- A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.Journal of neurology · 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
10 authors at 4 institutions in 1 country.
Funding
Abstract
purposeHuntington disease (HD) is an autosomal dominant neurodegenerative disease which results in several progressive symptoms, including bulbar dysfunction (i.e., speech and swallowing difficulties). Although difficulties in speech and swallowing in HD have a negative impact on health-related quality of life, no patient-reported outcome measure exists to capture these difficulties that are specific to HD. Thus, we developed a new patient-reported outcome measure for use in the Huntington Disease Health-Related Quality of Life (HDQLIFE) Measurement System that focused on the impact that difficulties with speech and swallowing have on HRQOL in HD.
methodsFive hundred and seven individuals with prodromal and/or manifest HD completed 47 newly developed items examining speech and swallowing difficulties. Unidimensional item pools were identified using exploratory factor analysis and confirmatory factor analysis (EFA and CFA, respectively). Item response theory (IRT) was used to calibrate the final measures.
resultsEFA and CFA identified two separate unidimensional sets of items: Speech Difficulties (27 items) and Swallowing Difficulties (16 items). Items were calibrated separately for these two measures and resulted in item banks that can be administered as computer adaptive tests (CATs) and/or 6-item, static short forms. Reliability of both of these measures was supported through high correlations between the simulated CAT scores and the full item bank.
conclusionsCATs and 6-item calibrated short forms were developed for HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties. These measures both demonstrate excellent psychometric properties and may have clinical utility in other populations where speech and swallowing difficulties are prevalent.
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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.