ArticleMovement disorders : official journal of the Movement Disorder Society2020
HDQLIFE and neuro-QoL physical function measures: Responsiveness in persons with huntington's disease.
Article in Movement disorders : official journal of the Movement Disorder Society, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 21 citations in OpenAlex.
- The psychometric properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system in neurorehabilitation populations: a systematic review.Journal of patient-reported outcomes · 2024Pooled it
- Factors Associated With Perceived Cognitive Dysfunction in Patients With Primary Brain Tumors: The Utility of the Neuro-QoL Cognition Function Scale.Cancer medicine · 2026Observational
- 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
- Impact of Upper Limb Function on Activities of Daily Living and Quality of Life in Huntington's Disease.Journal of clinical medicine · 2024Article
- Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study.Palliative medicine reports · 2023Article
- Article
- Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.Annals of clinical and translational neurology · 2021Article
- Psychometric Properties and Validation of the Polish Version of the 12-Item World Health Organization Disability Assessment Schedule 2.0 in Patients with Huntington's Disease.Journal of clinical medicine · 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
- Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020Article
- Lipidomics, Acute Ischemic Stroke, Symptoms, and Outcomes: Observational Study Protocol.Nursing researchArticle
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundHuntington's disease (HD) is a neurological disorder that causes severe motor symptoms that adversely impact health-related quality of life. Patient-reported physical function outcome measures in HD have shown cross-sectional evidence of validity, but responsiveness has not yet been assessed.
objectivesThis study evaluates the responsiveness of the Huntington Disease Health-Related Quality of Life (HDQLIFE) and the Quality of Life in Neurological Disorders (Neuro-QoL) physical function measures in persons with HD.
methodsA total of 347 participants completed baseline and at least 1 follow-up (12-month and 24-month) measure (HDQLIFE Chorea, HDQLIFE Swallowing Difficulties, HDQLIFE Speech Difficulties, Neuro-QoL Upper Extremity Function, and/or Neuro-QoL Lower Extremity Function). Of the participants that completed the baseline assessment, 338 (90.9%) completed the 12-month assessment, and 293 (78.8%) completed the 24-month assessment. Standardized response means and general linear models evaluated whether the physical function measures were responsive to self-reported and clinician-rated change over time.
resultsSmall to moderate effect sizes for the standardized response means supported 12-month and 24-month responsiveness of the HDQLIFE and Neuro-QoL measures for those with either self-reported or clinician-rated declines in function. General linear models supported 12-month and 24-month responsiveness for all HRQOL measures relative to self-reported declines in health, but generally only 24-month responsiveness was supported relative to clinician-rated declines in function.
conclusionsLongitudinal analyses indicate that the HDQLIFE and the Neuro-QoL physical function measures are sensitive to change over time in individuals with HD. Thus, these scales exhibit evidence of responsiveness and may be useful outcome measures in future clinical trials. © 2019 International Parkinson and Movement Disorder Society.
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