Abstract
Objective: To estimate the impact on quality of life (QOL) of different severity levels of chorea associated with Huntington’s disease (HD) using utility values from the general population.
Background: Chorea is characterized by sudden, involuntary movements that may interfere with QOL. Utility values measure preferences for different health states and reflect societal perceived disease severity. They are used by decision-makers to more accurately estimate treatment benefit. To date, no studies have reported utility values specifically for HD chorea.
Design/Methods: Participants representative of the general population were enrolled using computer-assisted telephone interviews to elicit HD chorea utility values. Participants were asked to read vignettes describing 4 health states for varying levels of chorea severity, with the same underlying HD severity. Time tradeoff (TTO) methods were used to estimate utility values, which range from −1 (worse than death) to +1 (perfect health) and represent the number of years in an imperfect health state an individual is willing to give up to live in full health. TTO utilities were augmented with Visual Analogue Scale (VAS) participant responses. The primary outcome was HD chorea utility estimated by TTO.
Results: TTO-derived utility values (n=155) increased as chorea severity decreased (mean±SD: severe, 0.07±0.52; moderate/severe, 0.26±0.50; moderate/mild, 0.48±0.47; mild, 0.64±0.41). Differences between each health state and its adjacent less severe health state were statistically significant (all P<0.0001). Respondents were willing to give up 3.6, 5.2, 7.4 and 9.3 years during a 10-year lifespan to avoid living with mild, mild/moderate, moderate/severe, and severe chorea, respectively. VAS and TTO results were consistent.
Conclusions: Significant decreases in utility values were seen as severity of HD chorea increased, suggesting that participants recognize the negative impact of HD chorea on daily functioning and QOL. These values can be leveraged for cost-effectiveness modeling to better understand the value of treatments for chorea.
Disclosure: Dr. Claassen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Lundbeck. Dr. Claassen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Teva Neuroscience. Dr. Claassen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Spark . Dr. Claassen has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Teva Neuroscience. Dr. Claassen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Wave Life Sciences. Dr. Claassen has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for HD Insights. The institution of Dr. Claassen has received research support from NIH. The institution of Dr. Claassen has received research support from CHDI. The institution of Dr. Claassen has received research support from HDSA. The institution of Dr. Claassen has received research support from Department of Defense. The institution of Dr. Claassen has received research support from Griffin Family Foundation. The institution of Dr. Claassen has received research support from Neurocrine. The institution of Dr. Claassen has received research support from Vaccinex. The institution of Dr. Claassen has received research support from AbbVie. The institution of Dr. Claassen has received research support from CHDI. The institution of Dr. Claassen has received research support from Genentech/ Roche. Debbie Goldschmidt has received personal compensation for serving as an employee of Analysis Group. Mo Zhou has received personal compensation for serving as an employee of Analysis Group, Inc.. Sam Leo has nothing to disclose. Rinat Ribalov has received personal compensation for serving as an employee of TEVA. Rajeev Ayyagari, PhD has received personal compensation for serving as an employee of Analysis Group, Inc. .
Disputes & Debates: Rapid online correspondence
REQUIREMENTS
If you are uploading a letter concerning an article:
You must have updated your disclosures within six months: http://submit.neurology.org
Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.
If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.
Submission specifications:
- Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
- Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
- Submit only on articles published within 6 months of issue date.
- Do not be redundant. Read any comments already posted on the article prior to submission.
- Submitted comments are subject to editing and editor review prior to posting.