Background Measurement of patient-reported outcomes is increasingly important in clinical trials because it provides the patients' point-of-view which reflects the overall net impact of any change or intervention. There are limitations in the use of generic health-related quality of life scales. The patient-derived Huntington's Disease health-related Quality of Life questionnaire (HDQoL) is a new disease-specific HrQoL questionnaire which aims to capture the true impact of HD across disease severity.
Aims This study examines the psychometric properties of the Huntington's Disease health-related Quality of Life questionnaire (HDQoL).
Methods A hundred and fifty two participants living with HD participated in this study, comprising at risk and gene positive presymptomatic individuals, as well as the full range of symptomatic participants. Participants completed the HDQoL, together with generic quality of life instruments, that is, SF-36 and EQ-5D. A subset of participants completed the HDQoL for a second time several weeks later.
Results The HDQoL scales demonstrate good test-retest reliability, construct validity, and scale acceptability. Its scales have acceptable measurement and psychometric properties reflecting the broad spectrum of patients and participants in this sample.
Conclusions The validated HDQoL scales provide promising patient-reported outcome measures specifically for HD.
- Huntington's disease
- patient-reported outcome
- quality of life
- Huntington's disease health-related quality of Life questionnaire (HDQoL)