Background The Huntington’s disease quality of life questionnaire (HDQoL) is a patient-derived instrument developed specifically for people living with Huntington’s disease. Early validation work on a pilot sample provided an informative indication of the properties of the scale and how this may be used.
Aims The current study aims to validate the HDQoL on a larger sample of patients in order to arrive at a more robust validation of the instrument.
Methods The 40-item HDQoL was completed by 541 participants, comprising of English speaking individuals across a range of Huntington’s disease severity levels including at risk, presymptomatic, early, mid and later stage. Confirmatory Factor Analysis was used to assess the scale structure proposed in the pilot study. Exploratory Factor Analysis was then used to inform the scale structure, and Rasch analysis was used to examine, refine and scrutinise the scale structure and its clinimetric properties.
Results The new data extends the early HDQoL work, and results suggest some refinements to further develop to the structure of the HDQoL. The new data are generally parallel to the original pilot work, and the specific domains suggested within the pilot HDQoL are largely replicated, resulting in the emergence of five stable unidimensional subscales that capture the impact of living with Huntington’s disease.
Conclusions The new data allowed for a more fully developed and robust scale structure to emerge. This supports the use of the HDQoL as an appropriate instrument to capture the patients’ own perspective on their health.
- quality of life
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