Objective:

Background:

Chorea is a defining motor symptom in patients with HD and can affect activities of daily living. Current assessments for HDC evaluate severity of involuntary movements. However, patients with HD are not always able to recognize and report functional impact of their chorea.

Design/Methods:

The final survey included potential questions to identify functional impairment due to HDC and was developed with steering committee guidance, exploratory interviews, and pilot testing. The panel included neurologists treating patients with HD, patients with HDC, and care partners of patients with HDC. The modified Delphi panel included 2 rounds of anonymized surveys conducted virtually from 6/30-7/31/2025 and 8/21-9/15/2025. Questions were rated from 1-9, in which “irrelevant” (1-3) denoted not important/meaningful to ask; “uncertain” (4-6) important/meaningful to ask, but not critical; ”relevant” (7-9) important/meaningful to ask. In Round 2, participants were invited to keep or revise their responses to Round 1 questions. Questions were considered relevant if the median rank across all 3 groups was 7-9. Consensus was defined as item’s ratings having an IQR≤2 with all median responses falling in one rating group.

Results:

Seventeen neurologists, 17 patients, and 13 care partners participated in the panel. Nearly all questions were considered relevant across groups, and all relevant questions in Round 1 remained relevant in Round 2. Consensus was reached for 15/29 (52%) questions in Round 1 and 24/29 (83%) in Round 2. Overall, questions identifying functional impairments in speech, gait and mobility, activities of daily living, and social life were considered the most important and relevant.

Conclusions:

The Delphi panel results will be used to guide development of a novel clinical tool to assist providers in identifying functional impairments due to HDC.