Introduction: Close long-term follow-up of patients with pulmonary carcinoid (PC) tumours is important for detection of recurrence, which can occur many years after primary surgery. Expert consensus guidelines for management of PC were published in 2015 (European Neuroendocrine Tumor Society (ENETS)) and provide recommendations for follow-up type, frequency and duration. The LEAP Project aimed to describe current follow-up practices in the UK following publication of the guidance, to inform future service improvements.
Methods: Between October 2016May 2017 face-to-face or telephone surveys were conducted with 27 lung NET clinicians from 27 UK centres, including all ten UK ENETS Centres of Excellence. Clinicians were asked about their current practices for follow-up of patients with PC after completion of initial treatment.
Results: Thirteen medical oncologists, six clinical oncologists and eight other specialists participated in the survey. The respondents were from centres with an estimated 5250 PC patients under current management and 280 new patients/year. Initial follow-up frequency in PC patients following completion of initial surgical treatment ranged from 2-monthly to annually. Follow-up duration ranged from 2-years to indefinite according to disease stage. The proportion of respondents using computed tomography (CT) scanning as part of follow-up in patients with typical carcinoid (TC) tumours ranged from 37% (10/27) for localised disease (N0M0 tumours) to 56% (15/27) for R1-resected cancer; and in atypical carcinoid (AC) tumours ranged from 41% (11/27) to 59% (16/27), respectively. Thirty-percent (8/27) of respondents reported using more intensive monitoring (i.e. more frequent, longer duration or greater use of scans) for AC than TC. Sixty-seven-percent (18/27) of respondents believe that patients may be lost-to-follow-up in the current PC management pathway. Possible reasons include patients being discharged or not referred to an appropriate specialist/MDT post-surgery, the perception of PC as low-risk tumours, patient non-attendance and age-related co-morbidities. Forty-eight-percent (13/27) of respondents have a database of lung NET patients.
Conclusion: Whilst there appeared to be some evidence of more intense follow-up of patients with AC tumours, these findings highlight large variations in practice in the UK and the opportunity to optimise management consistent with recently-published ENETS guidelines.
04 Dec 2017
UK and Ireland Neuroendocrine Tumour Society