Objectives: To explore the prevalence of dysphagia and fear of choking in patients with Huntington's disease (HD) as well as preventive measures, both those applied and those not included in... Show moreObjectives: To explore the prevalence of dysphagia and fear of choking in patients with Huntington's disease (HD) as well as preventive measures, both those applied and those not included in managing dysphagia. Also, to investigate related problems encountered by their formal and informal caregivers. Design: A multi-center observational cross-sectional study. Setting and Participants: 158 HD patients, recruited from six Dutch nursing homes specialized in HD, and their formal and informal caregivers Measurements: Patients were assessed by means of questionnaires enquiring about dysphagia, fear of choking and measures to manage dysphagia. Also, questionnaires were administered about awareness of dysphagia symptoms, cognition and anxiety. Because we expected individuals with greater care dependency to have a higher severity of dysphagia, we distinguished between a care-independent and a care-dependent group of HD patients. Results: In the total group, 90.5% of HD patients had one or more dysphagia symptoms. The prevalence of FoC in HD patients and the formal and informal caregivers' fears about choking in HD patients was 45.7%, 19.0% and 59.5%, respectively, for care-independent patients and 58.7%, 50.1% and 77.5% for care-dependent patients. The score on the Huntington's Disease Dysphagia Scale was a predictor for fear of FoC in care-independent patients. Speech-language therapy, supervision during eating and drinking and adaptation of food and drink consistency were the most frequently applied measures to manage dysphagia, a combination was used in most HD patients. Conclusions: In HD patients, the prevalence of dysphagia is high and fear of choking is common among both patients and caregivers. A more severe degree of dysphagia is a predictor of FoC in care-independent HD patients. A combination of measures was used to manage dysphagia in most HD patients. Show less
Swan, K.; Speyer, R.; Scharitzer, M.; Farneti, D.; Brown, T.; Cordier, R. 2022
The visuoperceptual measure for videofluoroscopic swallow studies (VMV) is a new measure for analysing the recordings from videofluoroscopic swallow studies (VFSS). This study evaluated the... Show moreThe visuoperceptual measure for videofluoroscopic swallow studies (VMV) is a new measure for analysing the recordings from videofluoroscopic swallow studies (VFSS). This study evaluated the reliability and validity of the pilot version of the VMV using classical test theory (CTT) analysis, informed by the consensus-based standards for the selection of health measurement instruments (COSMIN) guidelines. Forty participants, diagnosed with oropharyngeal dysphagia by fibreoptic endoscopic evaluation of swallowing, were recruited. The VFSS and administration of bolus textures and volumes were conducted according to a standardised protocol. Recordings of the VFSS were rated by three blinded raters: a speech-language pathologist, a radiologist and a phoniatrician. Inter- and intra-rater reliability was assessed with a weighted kappa and resulted in 0.889 and 0.944 overall, respectively. Structural validity was determined using exploratory factor analyses, which found four and five factor solutions. Internal consistency was evaluated with Cronbach's alpha coefficients, which found all but one factor scoring within an acceptable range (>0.70 and <0.95). Hypothesis testing for construct validity found the expected correlations between the severity of dysphagia and the VMV's performance, and found no impact of gender on measure performance. These results suggest that the VMV has potential as a reliable and valid measure for VFSS. Further validation with a larger sample is required, and validation using an item response theory paradigm approach is recommended. Show less
