OBJECTIVES: To assess the experience, perceptions, and satisfaction of neurologists with tetrabenazine (TBZ) when treating patients with Huntington disease (HD)-related chorea.

METHODS: Neurologists from Australia, Israel, and South Korea familiar with managing HD-related chorea with TBZ completed a 20-minute anonymous online questionnaire. Results were analyzed descriptively.

RESULTS: Among 20 neurologists who prescribed TBZ for a total of 103 patients in the previous 2 years, 90% were moderately (80%) or little/not at all (10%) satisfied with TBZ for the treatment/management of HD-related chorea, and only 10% were very/extremely satisfied. 33% reported that TBZ treatment was not optimal because of side effects/tolerability issues. Additionally, 25% reported that they were often/almost always unable to titrate TBZ to optimal doses because of side effects, including sedation and somnolence (35%) and depression (30%), and 15% reported that side effects often/almost always led to TBZ discontinuation. Among 24 neurologists who managed HD-related chorea for a total of 195 patients in the previous 2 years, most (83%) were familiar with TBZ, but prescribed it to less than half (47%) of their patients. The impact on patients’ quality of life and activities of daily living were the main motivations for treating HD-related chorea. The symptoms that the greatest proportions of neurologists considered very bothersome were impaired gait/posture/balance (58%), social withdrawal (50%), and difficulty focusing (42%). Main reasons for patients not receiving TBZ (n=92) were that the physician preferred to keep TBZ as a later treatment option (n=20), possible side effects (n=17), and previous patient experience with TBZ (n=10).

CONCLUSIONS: Neurologists reported that TBZ side effects prevented reaching an optimal clinical effect and often led to discontinuation, suggesting a need for additional effective treatment options with favorable benefit–risk profiles for HD-related chorea.