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.
No takes yet. Share an insight, caveat, or question.
Carlozzi et al. (2012) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: