Endocrine Abstracts

Background: Structured patient education has been used in chronic medical conditions such as diabetes mellitus, demonstrating both acceptability and improved outcomes. Here, we pilot the concept of group-based nutritional and dietary education in patients with NEN, delivered by specialist experts.

Aim: To evaluate 3 outcomes: 1) acceptability, 2) effectiveness and 3) improving accessibility to specialist experts in group education settings, advising on nutritional and symptom management for patients with NEN.

Methods: Patients were divided into two groups (small bowel NEN or non-functioning pancreatic NEN). Each group attended a 4-hour structured education session including an interactive session: 1) an overview of NEN by a NEN Consultant, 2) discussion of medical treatments such as somatostatin analogues and management of potential side effects by a NEN specialist nurse, 3) a mix of general nutrition education and more complex application to the nutritional considerations of NEN, presented by three NEN specialist dietitians. All participants completed established and bespoke pre and post course questionnaires.

Results: Of the 15 participants, 10 had small bowel NEN, and 5 had pancreatic NEN. Only 13% had consulted a specialist NEN dietitian prior to this, while 20% had previously seen a non-NEN specialist dietitian. In terms of outcomes: 1) 100% of participants supported the group education format and were open to attending the session again. 2) For the analysis of effectiveness, longer term follow up will be needed to ascertain if group education has lasting clinical benefit and this is planned. 3) In this course, all participants had access to experts with an open question and answer section to close the session.

Conclusion: This pilot model demonstrates that group education is an acceptable tool in patients with NEN. Over one third of patients found meeting others very beneficial. Further follow up and analyses are underway, and a larger multicentre study may be indicated. This education format could lend itself to an online platform and when optimised be available to other centres nationwide if needed. Based on this experience and feedback, the structured education program has been refined with plans to launch additional sessions in this patient group.