ArticleJournal of neurology2026
Development and validation of the first needs-based quality of life measure for individuals with manifest Huntington's disease.
Article in Journal of neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundHuntington's disease (HD) is a progressive, hereditary neurodegenerative disorder currently without curative treatments, thus making quality of life (QoL) an important outcome for clinical care and therapeutic evaluation. Existing HD-specific patient-reported outcome measures (PROMs) do not adequately capture the experiences of individuals with manifest HD. This study presents the multinational development and validation of the Huntington's Disease Manifest Quality of Life measure (HD-mQoL), the first needs-based, disease-specific PROM for assessing QoL in individuals with manifest HD.
methodsDevelopment followed three stages: (1) generation of measure content and translations; (2) testing of face and content validity; and (3) psychometric validation using data from a large international survey analysed with Rasch Measurement Theory (RMT) and Classical Test Theory (CTT).
resultsThe measure was completed by 238 individuals with manifest HD from the Czech Republic, Germany, Ireland, Italy, and the UK (59% male; age range 20-83 years). Rasch analysis reduced 49 items to a final set of 23, demonstrating good model fit (item-trait interaction χ
conclusionsThe HD-mQoL is a robust, needs-based measure of QoL, suitable for international use in clinical practice and trials assessing treatment value from the patient's perspective.
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