Quality of life in patients with gastroenteropancreatic tumours: A systematic literature review

Abstract

BACKGROUND Gastroenteropancreatic neuroendocrine tumours (GEP-NETs) are slow-growing cancers that arise from diffuse endocrine cells in the gastrointestinal tract (GI-NETs) or the pancreas (P-NETs). They are relatively uncommon, accounting for 2% of all gastrointestinal malignancies. The usual treatment options in advanced GEP-NET patients with metastatic disease include chemotherapy, biological therapies, and peptide receptor radionuclide therapy. Understanding the impact of treatment on GEP-NET patients is paramount given the nature of the disease. Health-related quality of life (HRQoL) is increasingly important as a concept reflecting the patients’ perspective in conjunction with the disease presentation, severity and treatment. AIM To conduct a systematic literature review to identify literature reporting HRQoL data in patients with GEP-NETs between January 1985 and November 2019. METHODS The PRISMA guiding principles were applied. MEDLINE, Embase and the Cochrane library were searched. Data extracted from the publications included type of study, patient population data (mid-gut/hind-gut/GI-NET/P-NET), sample size, intervention/comparators, HRQoL instruments, average and data spread of overall and sub-scores, and follow-up time for data collection. RESULTS Forty-three publications met the inclusion criteria. The heterogeneous nature of the different study populations was evident; the percentage of female participants ranged between 30%-60%, whilst average age ranged from 53.8 to 67.0 years. Eight studies investigated GI-NET patients only, six studies focused exclusively on P-NET patients and the remaining studies involved both patient populations or did not report the location of the primary tumour. The most commonly used instrument was the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 ( n = 28) with consistent results across studies; the GI-NET-specific module Quality of Life Questionnaire-GINET21 was used in six of these studies. A number of randomised trials demonstrated no HRQoL changes between active treatment and placebo arms. The Phase III NETTER-1 study provides the best data available for advanced GEP-NET patients; it shows that peptide receptor radionuclide therapy can significantly improve GEP-NET patients’ HRQoL. CONCLUSION HRQoL instruments offer a means to monitor patients’ general disease condition, disease progression and their physical and mental well-being. Instruments including the commonly used European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and GINET21 lack, however, validation and a defined minimal clinical important difference specifically for GI-NET and P-NET patients.

Physician-perceived utility of the EORTC QLQ-GINET21 questionnaire in the treatment of patients with gastrointestinal neuroendocrine tumours: a multicentre, cross-sectional survey (QUALINETS)

“…The findings of the present study confirm these benefits for the QLQ-GINET21. While some clinicians may be reluctant to systematically administer PROMs due to concerns about the associated increase in workload and/or misconceptions about the utility of such instruments [22], assessing patient perspectives has become increasingly relevant, particularly in patients with GI-NETs, who have a relatively long life expectancy and for whom quality of life is a key outcome measure [23].…”

“…1) versus the other dimensions is not surprising given that this dimension comprises the most complex aspects of patient care, and patient-reported data are only one piece of the complex clinical picture that the clinician must consider. Moreover, the capacity of this instrument to help improve clinical decision-making is limited by the fact that the minimal clinical important differences (MCID) for this instrument have yet to be defined [23].…”

“…Another limitation is that the QLQ-GINET21 was designed for use at an aggregate level, rather than for individual patients. Since the MCID for this instrument have not been defined and validated [23], this could have impeded the clinician's ability to accurately interpret the items, potentially leading the participants to overrate the true utility of certain items. By contrast, the main strength of this study is that it is the first to assess the perspective of physicians regarding the clinical utility of the QLQ-GINET21 in routine clinical practice.…”

Relationship between somatostatin receptor expressing tumour volume and health‐related quality of life in patients with metastatic GEP‐NET

“…Conversely, PRRT has been reliably shown to improve scores in the QLQ‐C30 domains global QoL, diarrhoea, insomnia and appetite loss, 12 as well as time to deterioration in other domains 13 . A recently published review noted that no studies had investigated how disease stage and tumour function affected HRQoL in GEP‐NET patients 14 . However, one study, not included in the above‐mentioned review, did indeed examine the relationship between tumour burden and HRQoL, and reported a moderate correlation between a nonstandard version of tumour stage and total scores of Norfolk QoL‐NET and the GI.NET21 module 15 …”

Health‐related quality of life and treatment effects in patients with well‐differentiated gastroenteropancreatic neuroendocrine neoplasms: A systematic review and meta‐analysis

“…Moreover, the evidence needs to be comprehensive, that is, include all or nearly all important outcomes, as patients may favour HRQoL prospects over prolonged survival (Shrestha et al, 2019). Previous systematic reviews have described HRQoL and oncological outcomes of treatments separately (Jimenez-Fonseca et al, 2015;Watson et al, 2020). However, to our knowledge, no publication has reported the effects of treatments on survival, tumour regression, adverse events and HRQoL together.…”