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This qualitative study explored health-related quality of life (HRQOL) in individuals with Huntington disease (HD). Sixteen focus groups were conducted (n = 6 groups with symptomatic HD individuals; n = 5 with individuals who are at-risk or prodromal for HD; n = 3 non-clinical HD caregivers; n = 2 groups with HD clinicians). Qualitative analysis indicated that 28% of focus group comments were related to emotional health, 27% to social participation, 26% to physical health, 10% to cognitive health, and 9% to end of life issues. Findings highlight the importance of developing HD-targeted items to ensure sensitive assessment of HRQOL in HD research and clinical practice.

Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease