Nursing - Theses
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ItemUnderstanding nutrition-related symptoms, complications and health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours( 2020)Gastroenteropancreatic neuroendocrine tumours (GEP NET) can lead to complex symptoms and reduced health-related quality of life (HRQoL). The management of GEP-NETs is challenging. To date there has been development of clinical practice guidelines and consensus guidelines for GEP-NETs; however, the supportive care needs and optimal nutritional management of patients affected by GEP-NETs remains under-researched and evidence to guide clinical practice is lacking. These malignancies have the potential to significantly impact on patient morbidity, HRQoL and nutrition due to the tumour location, functional status (secretion of hormones), symptoms and treatment. A limited number of published cross-sectional studies have indicated the presence of nutritional issues among patients with a GEP NET, including malnutrition (in 14-25%) and the presence of vitamin (niacin and fat-soluble vitamin) deficiencies. There is mostly anecdotal evidence for dietary change among patients with a GEP NET, and few studies have explored this phenomenon and its impact on patients. The aim of this thesis was to comprehensively describe the nutritional complications of GEP NET, and to explore the nutritional knowledge and practices of health professionals managing patients with a NET, enabling the first summary of NET health professional practices in regard to nutrition. A prospective longitudinal mixed-methods study was undertaken to comprehensively explore the prevalence of nutritional complications in patients diagnosed with a GEP NET. Patients recruited to this study had reduced HRQoL, specifically social functioning; and the presence of anxiety, depression and financial toxicity was observed. Common symptoms, reported in 40-80% of participants, were fatigue, abdominal discomfort, pain, bloating, wind/gas and diarrhoea. Results of this study showed that malnutrition was prevalent in up to 29% of patients, as was weight loss (up to 51%), loss of muscle mass (up to 62%) and dietary change (up to 56%), and all nutritional complications remained so over the six-month study period. Patient interviews conducted during the study period demonstrated the negative impact of a GEP NET diagnosis on patient’s HRQoL, and that dietary change and food restriction was often initiated by patients in response to their symptom burden. Nutrition and dietary information/management was identified by patients as an un-met need. Results of an exploratory mixed-methods health professional study showed that only 38% of NET health professionals are routinely performing screening for nutrition-related complications. Nutrition advice and management was varied and inconsistent, with health professionals identifying a lack of NET-specific nutrition evidence and guidelines as barriers to their practice. Results of the studies reported in this thesis contribute evidence and knowledge towards the presence and severity of nutritional complications among patients with a GEP NET, which are often under-recognised and impact on patient HRQoL. Results also provide the first summary of NET health professional nutrition-related practices. Results highlight the importance of identifying nutritional complications in this unique patient group and provide key insights into the nutrition risk factors relevant to patients with a GEP NET. This thesis will contribute to the future development of NET-specific nutrition guidelines and establishment of a robust nutrition risk screening process for NETs.