Abstract
Symptoms of carcinoid heart disease (CHD) can be subtle or absent even in advanced disease; therefore screening for CHD is important in the management of neuroendocrine tumours (NETs). Previous data in 2015 demonstrated variation in screening practices in the United Kingdom and Ireland; since then, consensus guidelines and European recommendations have been published on screening for CHD and surveillance in patients with NETs. We aimed to repeat the survey to compare current practice with the previous study. Eighteen NET centres caring for over 4,500 patients completed an online questionnaire on their patient population, CHD screening and surveillance practices, and the role of the multidisciplinary team. Screening occurred in all centres, including clinical examination in 56% of centres compared with 68% previously; all centres used biomarkers compared with 50% in 2015. Echocardiography was performed at varying frequency, mainly at baseline and repeated when biomarkers were abnormal (35%), compared with baseline in 21% previously. The timing of echocardiographic surveillance in established CHD remains varied: 6-monthly in 39%, annually in 17%, and according to cardiology input and individual patient context in 44%; compared with a variety of timings in 2015, ranging from less than 6-monthly to annually. The MDT included a cardiologist in 44% of centres compared with 50% previously, and 22% made cardiology referrals to a regional centre for CHD. Our findings suggest that although screening for and surveillance of CHD in the UK have improved, variation persists, which may contribute to late presentation.