Investigating Nutrition-Related Complications and Quality of Life in Patients With Gastroenteropancreatic Neuroendocrine Tumors: Protocol for a Mixed-Methods Prospective Study

Abstract

BackgroundGastroenteropancreatic neuroendocrine tumors (GEP NETs) are a heterogeneous group of tumors with distinct effects on the body due to their potential to secrete hormones and peptides. The incidence and prevalence of GEP NETs in Australia are rising. During 2000-2006, the annual incidence was approximately 3.3 per 100,000 population. To date, there has been development of clinical practice and consensus guidelines for NETs covering best practice for diagnosis, treatment, and medical management; however, the supportive care needs and optimal nutritional management of patients affected by NETs remains underresearched, and evidence to guide clinical practice is lacking. While there is emerging research describing the extent of morbidity in different types of GEP NET patients, little is known about the experience of people affected by these tumors and how nutritional status is impacted by either diagnosis or treatment.ObjectiveThe objective of this study was to explore nutrition-related complications and quality of life of patients diagnosed with a GEP NET and to generate evidence to inform future research and development of nutrition screening and management practices.MethodsPatients diagnosed with a GEP NET at two metropolitan recruitment sites will be invited to participate in a 6-month, mixed-methods longitudinal study. Participants recruited to the study will receive usual care and participate in data collection for the study at 4 time points (at recruitment and 2, 4, and 6 months postrecruitment). Study data will include nutritional status, body weight, fat-free mass, and patient-reported outcome measures (dietitian contact, disease-related symptom presence and severity, dietary habits, health-related quality of life, psychological morbidity, and financial impact). At recruitment and 6 months postrecruitment, complete nutrient testing, including relevant plasma vitamin levels, will also be undertaken. A purposive sample of participants will be invited to take part in semistructured interviews to explore the experience of living with a GEP NET and associated nutrition complications.ResultsEthics approval has been obtained, and study recruitment and data collection are underway.ConclusionsThis study will provide the first in-depth, comprehensive description of nutritional issues in patients with GEP NETs. Results will advance the knowledge of nutritional issues faced by patients with GEP NETs and help inform the development of screening tools and clinical practice guidelines.International Registered Report Identifier (IRRID)DERR1-10.2196/11228

The Neuroendocrine Neoplasms of the Digestive Tract: Diagnosis, Treatment and Nutrition

“…It is also crucial to supply liquids (potassium water in particular) to avoid dehydration. It is recommended to consume two liters per day [93,94]. One should eliminate liquids that include caffeine and strong tea because they do not hydrate well enough and they are rich in biogenic amines [95,96].…”

“…(A) Proposed dietary care solutions for patients with NEN according to the patient's nutritional status (BMI). Consume meals that include proteins, mainly lean poultry, cottage cheese, eggs and yoghurt;Carbohydrates: rice and finely ground oats, pumpkin, carrot, bananas, apples[66]; Exclude lactose, saccharose, fructose and glucose[15,66,93].…”

Role of Diet in the Management of Carcinoid Syndrome: Clinical Recommendations for Nutrition in Patients with Neuroendocrine Tumors

“…If these complications are not adequately treated, they can have significant negative impact on quality of life and physical functioning (31). Although not widely investigated, the association between nutrition-related complications and quality of life is being examined in a dedicated study in patients with gastroenteropancreatic NETs, and should help to provide a comprehensive description of the nutritional issues that these patients face (32).…”

Differential Diagnosis and Management of Diarrhea in Patients with Neuroendocrine Tumors

“…Patients with GEP NETs can experience numerous and complex symptoms due to the hypersecretion of hormones and peptides such as serotonin, gastrin, insulin, glucagon [5], vasoactive intestinal peptide (VIP) [6], and pancreatic polypeptide [7], which can lead to specific hormonal hypersecretory syndromes. The most prevalent symptoms in patients with GEP NETs include diarrhea, fatigue, abdominal discomfort, flushing, and food intolerance [5].…”

“…Among them, diarrhea is a highly recurrent symptom in patients with NETs, but its actual incidence is likely underestimated. Underlying causes of diarrhea can be multifactorial, including not only diarrhea related to specific hormonal hypersecretory syndromes but also diarrhea secondary to the following: extensive surgery that can cause pancreatic exocrine insufficiency (PEI) or short bowel syndrome, treatment with somatostatin analogs (SSAs) or other antineoplastic agents, and bile acid malabsorption [5]. In clinical practice, diarrhea is often attributed to the presence of hormone-secreting tumors, even in cases of uncertain diagnosis.…”