The NET Patient Foundation is committed to research into neuroendocrine cancers. This research can take different forms, but research that can have potential immediate impact in improving clinical experience, and understanding of the patients concerns is so valid.
The NET Patient Foundation has supported 2 recent publications, which have both utilised the patient experience to frame the work from inception. We are extremely grateful to our community for taking part in these projects and sharing their experience, fears and perceived needs.
Presenting symptoms and delay in diagnosis of gastrointestinal and pancreatic Neuroendocrine tumours.
Basuroy R, Bouvier C, Ramage J, Sissons M, Kent A, Srirajaskanthan R.
Full article.

Self-reported side effects in neuroendocrine tumour (NET) patients prescribed somatostatin analogues – the role for specialist dieticians and nurses.
Whyand T, Bouvier C, Davies P
The latter has been accepted for publication in the British Journal of Nursing and was presented at ENETs 2018.
Supporting patients suffering with side effects of NET treatments, including SSA’s contribute significantly to workload of NET Dieticians and Nurses. It is therefore important to ask what is wrong, to question how severe the patient experience has been, and to help raise awareness amongst NET health professionals. The results show what symptoms patients report whilst on SSA’s, and how severe these are. Constipation during SSA use is the most commonly reported symptom. Symptoms thought to be side effects during SSA use may not always have been reported to pharmaceutical companies over the years.

Full slide set.