Abstract
Background: Neuroendocrine Tumours (NETs) are a diverse group of cancerous tumours arising from cells of the neuroendocrine system. NETs are often reported in the literature as rare tumours, however their prevalence is similar to testicular and cervical cancer (around 2 cases per 100,000 people). NETs have a large impact on a patient’s quality of life due to symptoms caused through hormonal imbalance, for example diarrhoea, constipation and abdominal pain. Many of these symptoms and treatments provided to NET patients have an impact on nutritional status, yet there is little nutrition information available for NET patients.
Objective: To identify current nutritional issues and nutrition knowledge of NET patients in New Zealand (NZ) to inform a nutritional toolkit, which will be created as the secondary phase of this study.
Design: An online survey was conducted from 26th March to 23rd April 2018. Participants were recruited through the Unicorn Foundation NZ (NZ charity that supports NET patients), and the survey was distributed through a number of mediums to patients including via email, Facebook groups and at patient meetings across the country.
Results: Fifty seven participants completed the survey (74.6% female). Symptoms were reported by 89.5% (n= 51) of participants, and the most common reported symptoms were fatigue/weakness, diarrhoea, and gas/bloating (n= 39, 36 and 35 respectively). Almost two thirds (74.5%) of participants experienced five or more symptoms, with one participant reporting 17 symptoms in total. Only 12 (21%) participants reported receiving dietary information after their NET diagnosis, however 70.2% (n=40) of participants had made dietary changes after diagnosis. The most preferred option for receiving dietary information was written hard copy handouts (n= 35), followed by online resources or websites for NETs (n= 34) and face to face in person information (n=32).
Conclusion: This study demonstrates that NET patients in NZ are experiencing a large range of symptoms which could have an effect on their nutritional status. Many reported they were not receiving adequate, if any, dietary support for management of these symptoms, and therefore were self-managing changes to their diet. It also shows that NET cases are very diverse, hence dietary information provided needs to be tailored to the individual. It is apparent that a nutritional toolkit coupled with individualised dietetic therapy would be highly valuable to this group of patients.