Introduction The Videofluoroscopic Swallow Study (VFSS) is a commonly used dysphagia assessment that is routinely analysed visuoperceptually. However, no consensus exists regarding which... Show moreIntroduction The Videofluoroscopic Swallow Study (VFSS) is a commonly used dysphagia assessment that is routinely analysed visuoperceptually. However, no consensus exists regarding which visuoperceptual measures should be used to analyse VFSSs. Current visuoperceptual measures for VFSSs are limited by poor quality and incomplete or indeterminate psychometric properties. Objective This study aimed to establish the content validity for a new visuoperceptual VFSS measure for oropharyngeal dysphagia in adults, by identifying relevant domains of the construct and generating items and corresponding response scales. Methods Consensus among experts in dysphagia and VFSS from over 20 countries was achieved across three rounds of anonymous online surveys, using the Delphi technique. Participants judged relevance and comprehensiveness of definitions of visuoperceptual domains of VFSS and the relevance of various domains to the overall construct. After reaching consensus on definitions of relevant domains, consensus on items were established using the same process. Results Participants achieved consensus on definitions of 32 domains recommended for analysis, and at least one item per domain (range 1-4). Domains selected by participants included both those which occur in existing measures and domains which have not been included in any measures to date. This study will form the basis for content validity of a new measure for VFSS. Conclusions This first phase of developing a visuoperceptual measure of VFSS resulted in the identification of 32 domains and 60 items for oropharyngeal dysphagia. Developers can now advance to the next phase of measure construction; prototype development and psychometric testing. Show less
Fibreoptic Endoscopic Evaluation of Swallowing (FEES) and Videofluoroscopic Swallow Studies (VFSS) are instrumental assessments of dysphagia which provide videos of the internal structures of... Show moreFibreoptic Endoscopic Evaluation of Swallowing (FEES) and Videofluoroscopic Swallow Studies (VFSS) are instrumental assessments of dysphagia which provide videos of the internal structures of swallowing. They are commonly regarded as gold-standard' assessments; however, there is no consensus regarding a gold-standard measure to analyse the video recordings that they produce. Measures require sound psychometric properties to be suitable for clinical or research purposes. To date, no review of psychometric properties of FEES and VFSS measures has been undertaken or formally reported. This review assessed the quality of the psychometric properties of visuoperceptual measures of FEES and VFSS. Electronic databases were searched for studies reporting on psychometric qualities of visuoperceptual measures which are used to analyse recordings from FEES and VFSS. All dates until February 2017 were included. The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist was used to evaluate the methodical quality of studies. The measures' overall quality was then assessed by combining COSMIN ratings with quality criteria. Forty-five studies, reporting on 39 measures, met the inclusion criteria for this review. Data about the measures' psychometric properties were very limited. Twenty-one measures had information available about reliability only, while 18 had information on up to five of the possible nine psychometric properties categorised within the COSMIN framework. The majority of the FEES and VFSS measures' psychometric properties were rated as indeterminate' overall, due to the small number of studies, issues with design, statistical analyses, and reporting practices of extant studies. There is insufficient evidence to recommend any individual measure included in this review as valid and reliable to interpret VFSS and FEES recordings. Further research, which utilises robust methodological design and reporting, is needed to examine the psychometric properties of measures for FEES and VFSS. Show less
Huntington__s disease (HD) is a progressive neurodegenerative disease with an autosomal, dominant mode of inheritance. Patients with HD suffer from dysphagia which can have serious consequences,... Show moreHuntington__s disease (HD) is a progressive neurodegenerative disease with an autosomal, dominant mode of inheritance. Patients with HD suffer from dysphagia which can have serious consequences, such as weight loss, dehydration, and pneumonia leading to death. Many patients with HD die of aspiration pneumonia. In order to start monitoring dysphagia in HD patients systematically during different stages of the disease, a new measurement instrument was needed. We developed the Huntington__s Disease Dysphagia Scale. The availability of this new scale now allows prospective monitoring of dysphagia in patients with HD. Another aim was to investigate specific dysphagia features in HD using videofluoroscopy. We found that 78% of our patients suffered from dysphagia. Swallowing difficulties start already in the first stage of HD, and become more severe as the disease progresses. The final aim was to initiate intervention studies on dysphagia in HD. We began by developing a guideline based on best practice. The guideline describes dysphagia problems per stage of HD, and makes recommendations for intervention and clinical advice. One of the recommendations in the European guideline is the chin tuck position while swallowing. As there is no evidence for improvement with this intervention for HD patients, we carried out a videofluoroscopic swallowing test with and without the chin tuck test procedure. No significant differences were found for spilling, aspiration or residue in swallowing with the head in normal upright position or the chin tuck posture. We therefore recommend that the chin tuck intervention should not be used in HD patients. Show less