title: Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease.
abstract: 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.
authors.affiliation: University of Michigan, Department of Physical Medicine & Rehabilitation, Ann Arbor, MI 48109-2800, USA. carlozzi@med.umich.edu
authors.forename: Noelle E
authors.initials: NE
authors.lastname: Carlozzi
authors.forename: David S
authors.initials: DS
authors.lastname: Tulsky
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010820:Physicians / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*