Endocrine Abstracts

Background: Neuroendocrine tumours (NETs) are rare cancers often associated with distressing gastrointestinal (GI) symptoms and malnutrition, significantly impacting patients’ quality of life. Despite this, there is a paucity of qualitative research exploring how these symptoms affect day-to-day living.

Aim: This study aimed to explore the experiences of people living with NETs, focusing on GI symptoms and nutritional challenges, to inform and enhance clinical care.

Methods: A single-centre, qualitative study was undertaken involving semi-structured interviews with six individuals diagnosed with gastro-entero-pancreatic NETs. Participants were purposively sampled from a tertiary UK NET centre. Interviews were conducted online, transcribed, and analysed using a framework approach supported by NVivo© software.

Results: Four key themes were identified: (1) Living with uncertainty regarding symptom origin, disease progression, and management; (2) Living with a NET, including the impact on everyday life and necessary adaptations; (3) Learning to self-manage, with emphasis on diet, treatment, and information-seeking; and (4) Feelings of gratitude as a coping mechanism. GI symptoms such as diarrhoea, urgency, and steatorrhoea were reported to be the most disruptive. Participants described using various strategies to regain control, often in the context of limited support and unmet information needs.

Conclusion: This study provides valuable insights into the lived experiences of people with NETs, particularly regarding malabsorption and nutritional difficulties. Findings highlight the importance of timely access to specialist support, person-centred information, and strategies that empower patients to self-manage. Addressing uncertainty and supporting psychological resilience should also be a key focus of care.

Key Words: Neuroendocrine tumours (NETs), Gastrointestinal symptoms, Malnutrition, Qualitative research, Patient experience, Diarrhoea, Quality of life