Weight loss and eating difficulties are common in Huntington's disease (HD), but professionals’ perspectives remain underexplored.
Objective
To investigate professionals and service users’ perspectives on weight loss and eating difficulties, and explore how these issues are prioritized, managed, and experienced.
Methods
Semi-structured interviews (n = 19; 10 professionals, 9 service users) in the UK. Reflexive thematic analysis identified key themes regarding the causes, management, and impact of eating problems in HD.
Results
Six themes emerged: (1) Common tactics for weight gain and their limitations, (2) Variability in professional knowledge and access to care, (3) Cognitive and psychopathological contributors to weight loss, (4) Physical and practical barriers to eating, (5) Social and emotional impacts of feeding difficulties, and (6) Perceptions of weight loss and disease progression. Within these themes we found that, amongst other findings, high-energy diets and supplements are widely used but often poorly tolerated long-term. Access to specialist care is inconsistent, leading to a “geographical lottery”. Cognitive and psychological symptoms, including apathy and executive dysfunction, significantly affect eating behaviors. Physical symptoms such as chorea and dysphagia further complicate intake. Social withdrawal due to embarrassment is common. Weight loss is often under-recognized or under-prioritized by patients.
Conclusions
Causes of weight loss are complex and need multidisciplinary holistic management, which is not always available. Management of complex psychosocial factors is as important as managing physical symptoms. Proactive, personalized interventions can improve both longevity and quality of life for people with HD.
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