Abstract

Simple SummaryNeuroendocrine tumors (NETs) are a group of heterogenous neoplasms arising from the diffuse neuroendocrine system. Several therapies have been added to the treatment landscape that have improved long-term outcomes. Despite therapeutic advancements, the symptom burden of the disease remains high, impacting health-related quality of life (HRQoL). In this study, we reviewed the impact of different treatment modalities on HRQoL in NET patients. Through a thorough literature review, 61 out of 2375 publications met the inclusion criteria. All randomized phase III trials leading to drug approvals showed a lack of deterioration of HRQoL, and one showed improved QoL. Capturing and understanding patient-reported outcome data is of vital importance for both patients and physicians to make treatment-related decisions.Therapeutic advancements in neuroendocrine tumors (NETs) have improved survival outcomes. This study aims to review the impact of the current therapeutics on health-related quality of life (HRQoL) in NET patients. A literature review was performed utilizing PubMed, The Cochrane Library, and EMBASE, using the keywords “Carcinoid”, “Neuroendocrine tumor”, “NET”, “Quality of life”, “Chemotherapy”, “Chemoembolization”, “Radiofrequency ablation”, “Peptide receptor radionucleotide therapy”, “PRRT”, “Surgery”, “Everolimus”, “Octreotide”, “Lanreotide”, “Sunitinib”, and “Somatostatin analog”. Letters, editorials, narrative reviews, case reports, and studies not in English were excluded. Out of 2375 publications, 61 studies met our inclusion criteria. The commonly used instruments were EORTC QLQ-C30, FACT G, and EORTC- QLQ GI.NET-21. HRQoL was assessed in all pivotal trials that led to approvals of systemic therapies. All systemic therapies showed no worsening in HRQoL. The NETTER-1 study was the only study to show a statistically significant improvement in HRQoL in several domains. The trial examining sunitinib versus placebo in pancreatic NETs showed no change in QoL, except for worsening of diarrhea. In addition to clinical outcomes, patient-reported outcomes are a key element in making appropriate treatment decisions. HRQoL data should be readily provided to patients to assist in shared decision-making.

Highlights

  • Neuroendocrine tumors (NETs) are a group of heterogeneous malignancies that originate from neuroendocrine cells

  • Our literature search revealed a total of 61 studies, which assessed the wellness of patient-reported quality of life (QoL) in NET patients using validated questionnaires

  • We found two review articles focusing on health-related quality of life (HRQoL) in NET patients [72,73]

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Summary

Introduction

Neuroendocrine tumors (NETs) are a group of heterogeneous malignancies that originate from neuroendocrine cells. Multiple new treatments have been approved in recent years, primarily based on the evidence of inhibition of tumor growth and delay of disease progression [3–8]. The symptomatic burden of disease remains high. NETs are associated with a wide range of symptoms from excess hormone production to tumor burden, which affect quality of life. Clinical trials for new treatment options generally focus on disease progression and toxicity rather than quality of life. Treatment decisions are often based on patient comorbidities and the toxicity profile of the drugs, rather than taking patient preference or symptoms into consideration. Decision-making aimed only at improving overall survival with newer drugs may not achieve a desired symptom control goal or quality of life

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