Scoping review identifies dysphagia interventions and outcome measures in Huntington’s disease, indicating significant research gaps.
Background Many individuals with Huntington’s disease (HD) experience significant difficulties with eating, drinking, and swallowing, with aspiration pneumonia being the leading cause of death. Although dysphagia is a major clinical concern, little is known about the range of evidence based interventions for this population or the outcome measures being used to determine change. Objective This scoping review aims to (i) identify dysphagia interventions investigated for adults with HD and (ii) determine the outcome measures used to evaluate their impact on swallowing and quality of life (QoL) for individuals and caregivers. Methods This scoping review will be completed using the Arksey & O’Malley (2005) framework and reported using the PRISMA-ScR guidelines. Articles dicussing adults with HD who require interventions to treat eating, drinking and swallowing difficulties will be included. CINAHL, EMBASE, MEDLINE, Web of Science, ProQuest Dissertations & Theses, and ClinicalTrials.gov will be searched using two search strings (dysphagia and Huntington’s disease) without date or language restrictions. Two reviewers will independently screen, extract, and categorize data according to intervention type and outcome measures used. Conclusions Findings from this scoping review will capture the current evidence base for dysphagia intervention in HD. By mapping available interventions and outcome measures, this review will identify gaps in dysphagia research in HD, and inform the design of future clinical studies.
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Crosby et al. (2025) studied this question.
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