Background: Individuals with a very high lifetime risk of developing pancreatic ductal adenocarcinoma; for example, hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm, may wish to discuss prophylactic total pancreatectomy but strategies to do so are lacking. Objective: To develop a shared decision-making programme for prophylactic total pancreatectomy using decision tables. Methods: Focus group meetings with patients were used to identify relevant questions. Systematic reviews were performed to answer these questions. Results: The first tables included hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm. No studies focused on prophylactic total pancreatectomy in these groups. In 52 studies (3570 patients), major morbidity after total pancreatectomy was 25% and 30-day mortality was 6%. After minimally invasive total pancreatectomy (seven studies, 35 patients) this was, respectively, 13% and 0%. Exocrine insufficiency-related symptoms occurred in 33%. Quality of life after total pancreatectomy was slightly lower compared with the general population. Conclusion: The decision tables can be helpful for discussing prophylactic total pancreatectomy with individuals at high risk of pancreatic ductal adenocarcinoma.

cancer risk, diabetes mellitus, hereditary pancreatitis, intraductal papillary mucinous neoplasm, mutation, Pancreatic ductal adenocarcinoma, prophylactic total pancreatectomy
dx.doi.org/10.1177/2050640620945534, hdl.handle.net/1765/129210
United European Gastroenterology Journal
Department of Gastroenterology & Hepatology

Scholten, L. (Lianne), Latenstein, A.E.J. (Anouk EJ), Aalfs, C.M, Bruno, M.J, Busch, O.R.C, Bonsing, B.A, … Besselink, M.G. (2020). Prophylactic total pancreatectomy in individuals at high risk of pancreatic ductal adenocarcinoma (PROPAN): systematic review and shared decision-making programme using decision tables. United European Gastroenterology Journal. doi:10.1177/2050640620945534