NETs are uncommon, and there is no consensus regarding the optimal follow-up frequency or modality after resection. Current follow-up guidelines for resected GEP-NETs are based on limited evidence and our large, international practice survey showed poor compliance by NET expert clinicians. A need for clear and practical guidelines was identified.
A RAND/UCLA appropriateness process was employed given the lack of published data. A systematic review was undertaken as well as a multi-national practice survey to understand current follow-up patterns. Results from two large retrospective reviews (Ontario, Canada and Tampa, Florida) examining outcome following curative surgery were obtained. An 18-member multidisciplinary international panel scored 193 clinical scenarios for appropriateness of timing of consultations and investigations for detecting recurrence on a 1-9 scale. At a face-to-face consensus conference, the final follow-up recommendations were developed.
Twelve studies were identified describing follow-up strategies post-resection, with only one comparing follow-up strategies. Data from our practice survey (n = 163) and our population-based study (n = 936) are separately reported. Based on the scenario scoring, the panel resolved 14 summary statements, with the major themes of (1) less frequent follow up visits and investigations within the first five years (2) longer follow up even beyond 10 years (3) different recommendations for pancreatic versus gastrointestinal NETs (4) identification of low risk subgroups where no routine follow-up was recommended (5) no role for any serum or urine biomarkers, or chest imaging (6) the need to evaluate functional imaging in follow-up.
Streamlined, practical guidelines were developed for the follow-up of patients with resected GEP-NETs. These guidelines differ significantly from other current guidelines. The expert consensus was informed by previously unavailable large outcome datasets. Compliance, cost-effectiveness and patient acceptability will be evaluated in future studies.
Clinical trial identification
Legal entity responsible for the study
Sunnybrook Research Institute
S. Singh: Honoraria and travel funding from Ipsen, Pfizer and Novartis. D. Chan: Travel support from Novartis and honoraria from Ipsen. D. Metz: Vice Chair at NANETS, consultant for Novartis and Ipsen. Commercial research grant from Lexicon and AAA. Consultant/advisory board for AAA. J. Strosberg: Consultation for Novartis and Ipsen. E. Segelov: Honoraria from Roche, Bayer, Ipsen and Pfzier; research funding from Merck Serono and Ipsen; travel support from Roche and Ipsen. All other authors have declared no conflicts of interest.