I18 The HDQoL depicts disease stages more comprehensively relative to generic quality of life measures: initial pilot data

BackgroundThe importance of determining the impact of Huntington’s disease (HD) on a person’s health is particularly relevant given the protracted course of this condition. For this reason, the disease specific Huntington’s disease quality of life (HDQoL) was developed directly from patients interviews in order to fully capture the experience of living with HD.AimsThe current study aims to examine HD impact across the spectrum of disease using a patient-derived disease-specific instrument i.e. the Huntington’s Disease health-related Quality of Life questionnaire (HDQoL). Generic quality of life measures from the same cohort for the time point will be presented for comparison.MethodsAn initial sample of one hundred and fifty two participants completed the HDQoL, the SF-12 and EQ-5D questionnaires, as well as a single-item global quality of life question.ResultsThe HDQoL scales provided the most differentiation across functional disease stages in this cross-sectional study relative to the generic measures. The HDQoL depicted a more comprehensive picture of health-related quality of life in HD from the earliest at risk and presymptomatic stages till the latter stages of disease. Non-physical emotional aspects were more negatively affected than physical health-related quality of life early on in the course of disease, before they are overtaken by the more physical aspects of HD.ConclusionThe findings demonstrate the utility of the Huntington’s–specific HDQoL instrument over generic measures in capturing the true level of impact on the full range of aspects affected in Huntington’s disease.