Abstract
ObjectivesTo 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.DesignA multi-center observational cross-sectional studySetting and Participants158 HD patients, recruited from six Dutch nursing homes specialized in HD, and their formal and informal caregiversMeasurementsPatients 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.ResultsIn 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.ConclusionsIn 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.
Highlights
Huntington’s disease (HD) was first described in 1872 by George Huntington [1]
As little is known about dysphagia and fear of choking (FoC) in HD patients, or about the formal and informal caregivers’ fear that the patients might choke, this study aims to explore the prevalence of dysphagia symptoms, the prevalence of FoC in HD patients and their caregivers and the measures currently applied, as well as those not included in managing dysphagia in HD patients
There was no significant difference between the groups with regard to age (p=0.06), gender (p=0.72), prevalence of dysphagia symptoms (0.43), severity of dysphagia (p=0.16), BMI (p=0.66), anxiety (p=0.60) or awareness of dysphagia symptoms (p=0.07)
Summary
Huntington’s disease (HD) was first described in 1872 by George Huntington [1]. This autosomal dominant inherited disease is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia [2]. Dysphagia is common in patients with HD, but little is known about its frequency or at what stage it becomes clinically evident [4]. We do notice HD patients with dysphagia taking great risks while eating and drinking. Lack of awareness is a possible reason for experiencing less fear, as described by MCusker and Loy: ‘symptoms or the impact are obvious to the objective observer, but the individual does not notice or underestimates them’ [12]. The level of fear that is experienced by HD patients can be influenced by cognitive factors, such as the Received October 4, 2021
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