Year: 2024
Type: conference-abstract
Abstract: Background Weight loss in Huntington’s Disease (HD) is a common symptom with multiple contributing factors. Being underweight in HD is associated with earlier onset of symptoms with accelerated deterioration. Weight loss is not seen as a priority issue for HD professionals or service users. Aims To speak to HD professionals to learn more about attitudes towards weight, eating and food in HD. Methods 10 health professionals from different backgrounds working with people with HD were interviewed. The interviews were analysed using reflexive thematic analysis. Results Little care is given to wider nutritional needs, with professionals focused on ‘getting the calories in’. Patients can be prescribed several high-calorie milkshakes per day, which are poorly tolerated. No NICE guidelines for professionals to refer to. People with manifest HD gravitate towards high sugar, high calorie snacks as they are accessible and require little cognitive/practical effort. Swallowing and chewing issues cause anxiety and avoidance, narrowing options and closing off the social aspects of food and eating. Degradation of daily routines can lead to ‘chaotic’ lifestyles in which regular meals are commonly skipped and people opt for accessible foods. Specialist HD healthcare provision is largely dependent on where you live, some families on regional boundaries are ‘falling between’ services, experiencing worse outcomes. Conclusions The multifactorial nature of weight loss in HD is not adequately considered by professionals. Regular monitoring of BMI should be employed and treatments should focus on the wider contributors to weight loss, instead of focusing on calories.
Institution: University of Hull
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374545