Development of a Nutrition Toolkit for New Zealand Patients with Neuroendocrine Tumours
Background: Neuroendocrine Tumours (NETs) is an umbrella term used to describe a complex group of heterogeneous tumours. These tumours can take on the ability to secrete hormones, peptides and amines which can cause an identifiable collection of symptoms, known as a syndrome. Symptoms and syndromes experienced by patients have a negative impact on patients’ quality of life (QoL) and nutritional status. To date there are no official published guidelines on the effective nutritional management of NETs, nor any research undertaken to investigate effective dietary management that would substantiate the development of guidelines. Current evidence is based on the 2005 unpublished work of the late American dietitian, Monica Warner. In addition, there is a lack of credible, evidence based symptom management information for New Zealand patients to access, with no NET specific nutrition resources published in NZ. Patients have previously highlighted, via the Unicorn Foundation (NET patient support group) and a survey, that there is a lack of easily accessible credible nutritional information, especially early in diagnosis, when this information is highly important. Objective: The primary aim of Phase two of this study is to develop a nutritional toolkit for New Zealand patients with neuroendocrine tumours (NETs). The second aim is to find out from patients and registered dietitians how useful, readable, and appropriate the information in the toolkit is. Methods: Nutritional priorities and concerns of NZ NET patients were identified in Phase 1 of this study. These results were used to inform and guide the development and content of the NETs nutrition toolkit. Eight, single sided nutrition tip sheets were designed addressing these priorities and concerns. Two dietitians with expertise in developing dietetic nutritional resources for patients reviewed the tip sheets. Patients with NETs were recruited through the Unicorn Foundation NZ via email to evaluate the tip sheets. To gain feedback on content, layout and usefulness, the toolkit and a short survey was emailed to participants after gaining consent. Dietitians with expertise in dietetic management of patients with NETs were also approached to give professional feedback on the toolkit. Amendments were made to the toolkit tip sheets based on feedback received. Results: Descriptive analysis of toolkit evaluation responses yielded three overarching themes: knowledge and understanding; information; usefulness and relevance. Each overarching theme had several subthemes. Subthemes were subsequently used to amend the draft toolkit to meet the expectations of the target patient group. Overall, patients indicated that the resource was very informative and would be beneficial especially for patients, especially when first diagnosed. Conclusion: Nutrition plays a pivotal role in the management of symptoms and side effects of NETs and their treatments. This toolkit meets the expressed needs of the target patient group, providing an easily accessible nutrition resource, that was not previously available in NZ. Improved control over symptoms through nutritional management strategies via easily accessible tip sheets may lead to an increase in patient quality of life and nutritional status.
Advisor: Perry, Tracy; Pattison, Sharon
Degree Name: Master of Dietetics
Degree Discipline: Department of Human Nutrition
Publisher: University of Otago
Keywords: Nutrition; Neuroendocrine; Tumours; NETs; Toolkit; NewZealand
Research Type: Thesis