Gastroenteopancreatic neuroendocrine tumours (GEP NET) are a heterogenous group of rare tumours located in the gastrointestinal tract and pancreas. GEP NET have distinct effects on the body due to their potential to secrete hormones and peptides, which can lead to symptoms of flushing, fatigue, severe diarrhoea, food intolerance and fluctuations in mood. Misdiagnosis is common due to the generalised nature of gastrointestinal symptoms, and NET-related symptoms may persist for long periods placing substantial burden on the patient and the health care system. Although potential side-effects of NET and their treatment are well documented, there is limited information on the impacts of a NET diagnosis on nutritional factors and patient experience. Furthermore, there are limited practice guidelines and information guiding the supportive care needs and optimal nutritional management of people with NETs.
To address this gap a purposive sample of patients diagnosed with a GEP NET and newly referred to the NET unit at Peter MacCallum Cancer Centre, were invited to participate in a semi-structured interview. Interviews aimed to describe the experience of people living with a GEP NET, with a particular focus on dietary intake, nutritional status and the prevalence of nutrition-related symptoms. Eleven interviews were conducted. Eight (72%) participants were male and the average age was 56 years (range 29 – 71). Most participants were within 6 months of diagnosis, except for two who were several years post diagnosis (8 and 18 years respectively).
Interview audio was transcribed verbatim and thematic analysis was conducted. Participants reported difficulty finding nutrition information and support after their diagnosis and common themes included unmet nutrition information needs and patient-initiated diet changes or restrictions. Nutrition-related symptoms and weight loss were reported to influence quality of life and social activities.