title: The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life.
abstract: Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease-specific patient-reported health-related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi-structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data-driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient-derived scales provide promising patient-reported outcome measures for HD.
authors.affiliation: Department of Psychology, School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK.
authors.forename: M B
authors.initials: MB
authors.lastname: Hocaoglu
authors.forename: E A
authors.initials: EA
authors.lastname: Gaffan
authors.forename: A K
authors.initials: AK
authors.lastname: Ho
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D006816:Huntington Disease / Q000453:epidemiology* / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires