ArticleThe patient2018
Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States.
Article in The patient, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Efficacy and safety of vesicular monoamine transporter 2 inhibitors for Huntington's disease chorea based on network meta-analysis.Frontiers in pharmacology · 2025Pooled it
- Trial
- Longitudinal assessment of chorea in Huntington's disease using digital passive monitoring.NPJ digital medicine · 2026Article
- Integrating Digital and Ancillary Technologies in the Modern Clinical Evaluation of Chorea.Movement disorders clinical practice · 2025Article
- Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington's Disease: Data from Enroll-HD.Neurology and therapy · 2025Article
- Huntington Disease Health Related Quality of Life, Function and Well Being: The Patient's Perspective.Neurology and therapy · 2025Article
- Review
- Safety of Deutetrabenazine for the Treatment of Tardive Dyskinesia and Chorea Associated with Huntington Disease.Neurology and therapy · 2024Article
- Real-world experience with Deutetrabenazine management in patients with Huntington's disease using video-based telemedicine.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Article
- Predictors of persistence and adherence to deutetrabenazine among patients with Huntington disease or tardive dyskinesia.The mental health clinician · 2023Article
- Guided self-help for anxiety among Huntington's disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial.Pilot and feasibility studies · 2023Article
- Online Health Communities: an alternative feasible data registry tool for developing countries.Health research policy and systems · 2023Article
- Healthcare utilization, costs, and epidemiology of Huntington's disease in Israel.Clinical parkinsonism & related disorders · 2023Article
- Delivery of RNAs to Specific Organs by Lipid Nanoparticles for Gene Therapy.Pharmaceutics · 2022Review
- Defining Utility Values for Chorea Health States in Patients with Huntington's Disease.Advances in therapy · 2022Article
- Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington's Disease.Journal of health economics and outcomes research · 2021Article
- State-of-the-art pharmacological approaches to reduce chorea in Huntington's disease.Expert opinion on pharmacotherapy · 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
- 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
- Exercise in Huntington's Disease: Current State and Clinical Significance.Tremor and other hyperkinetic movements (New York, N.Y.) · 2019Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundChorea is the hallmark motor feature of Huntington disease (HD) and can negatively impact daily functioning and health-related quality of life (HRQoL).
objectiveThe objective of this study was to evaluate how chorea impacts HRQoL and overall functioning among HD patients participating on the PatientsLikeMe website ( www.PatientsLikeMe.com ).
methodsA survey was provided to HD participants and/or their caregivers via PatientsLikeMe (9 February 2017-22 March 2017), comprising multiple-choice and open-ended questions designed to assess how chorea impacts HRQoL and overall functioning, and the importance of treating chorea. The HDQLIFE measurement system was used to evaluate patient-reported outcomes of chorea and compare Anxiety and Stigma scores in participants with high chorea versus those with low chorea [HDQLIFE Chorea scores ≥ 60 (n = 45) vs. < 60 (n = 38)].
resultsA total of 115 participants (n = 35 caregivers; n = 80 individuals with HD) were included in this study. Among those experiencing chorea (n = 83, 74% of respondents), 66% indicated it was 'Very Important' to manage chorea; however, only 47% agreed that their current medication regimen helped manage their movements. In general, respondents reported that chorea negatively affected HRQoL [HDQLIFE Chorea mean score (standard deviation): 59.3 (6.1)]. Consistent with this, significantly higher Anxiety (P = 0.0423) and stigma (P < 0.0001) scores were observed among respondents with high chorea than in those with low chorea.
conclusionsThese results highlight the negative impact of chorea on HRQoL and overall functioning in individuals with HD. Better chorea treatment options are needed to successfully manage symptoms and to help improve HRQoL in these individuals, and patient experiences of anxiety and stigma should be considered in treatment plans.
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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.