A Systematic Review of Symptoms and Quality of Life Issues in Pancreatic Neuroendocrine Tumours

Abstract

Purpose: Pancreatic neuroendocrine tumours (pNETs) are rare neoplasms, in that they may only present symptoms of the hormone secreted, without any generic cancer issues. It is thus important to measure quality of life (QoL) in these patients by evaluating issues relevant and important to them, as opposed to general cancer issues. This paper systematically reviews papers addressing the symptoms and QoL implications of pNETs, and evaluates each subtype separately, with the aim to create a list of QoL issues relevant to these patient groups. Methods: Medline, EMBASE, CINAHL, PsycInfo, Web of Science, Scopus, OpenGrey, and the Cochrane Library were searched for publications (1990-2016) reporting symptoms and QoL issues in pNETs. Results: Following screening of 2,797 papers, 69 articles were eligible for data extraction. From these papers, 84 different symptoms or QoL issues were extracted: 21 for gastrinoma, 18 for glucagonoma, 50 for insulinoma, 10 for VIPoma and 15 for non-functioning pNETs. No issues were reported for somatostatinoma, PPoma or ACTHoma. The most frequently reported symptoms vary by subtype. Conclusions: This review emphasises the need to develop a QoL measure for pNETs with specific items relevant to the different subtypes, due to the distinct symptoms reported. Following from this review, patient and healthcare professional interviews will be conducted in large cohorts across many different countries to collect more data on QoL issues specific to pNETs. This data will all be collated with the aim to create a QoL measure for pNETs.