Category: Huntington's Disease
Objective: Objectives of this study were to explore patient-reported ease of use, effectiveness, and satisfaction during real-world use of once-daily (QD) deutetrabenazine extended-release tablets in adults with Huntington disease (HD)-related chorea or tardive dyskinesia (TD). Survey findings from participants with HD-related chorea are reported.
Background: Deutetrabenazine is approved by the United States Food and Drug Administration for treatment of HD-related chorea and TD.
Method: This noninterventional, prospective, cross-sectional, institutional review board–approved survey included adults with HD-related chorea or TD taking deutetrabenazine QD. Participants in Shared Solutions patient support program who completed/were due for their 12-week nurse outreach telephone call were eligible for screening. Consenting participants received survey materials (deployment, July 2–October 9, 2024) by mail or email.
Results: Among 240 participants, 31 reported having HD-related chorea. For participants with HD-related chorea, the mean (SD) age was 62.7 (11.6) years; 51.6% were female; 93.5% were White; and 58.1% reported taking no prior HD-related chorea medication. For adults with HD-related chorea, 71.0% reported their extra movements were very much/much improved with deutetrabenazine QD; 71.0% and 74.2% strongly agreed/agreed that since starting deutetrabenazine QD, reduction in their extra movements has improved their comfort in social settings and emotional well-being, respectively; 58.1% and 59.3% strongly agreed/agreed that reduction in their extra movements has improved their overall physical health and work/school life, respectively. Overall, 96.8% reported it was very/somewhat easy to take deutetrabenazine QD; 96.7% strongly agreed/agreed they will continue taking deutetrabenazine QD; and 93.5% reported overall satisfaction with deutetrabenazine QD.
Conclusion: Nearly all participants reported overall satisfaction with deutetrabenazine QD stating that deutetrabenazine QD was easy to use and include in their daily routines. Most participants reported improvements in their extra movements since starting deutetrabenazine QD, which led to positive impacts on several quality-of-life domains.
To cite this abstract in AMA style:
B. Bulica, M. Konings, S. Thompson, A. Yang, S. Kotak, P. Gandhi. Patient Experience and Satisfaction With Once-Daily Deutetrabenazine Extended-Release Tablets for Treatment of Huntington Disease-Related Chorea [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/patient-experience-and-satisfaction-with-once-daily-deutetrabenazine-extended-release-tablets-for-treatment-of-huntington-disease-related-chorea/. Accessed October 5, 2025.« Back to 2025 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-experience-and-satisfaction-with-once-daily-deutetrabenazine-extended-release-tablets-for-treatment-of-huntington-disease-related-chorea/