Prophylactic total pancreatectomy in individuals at high risk of pancreatic ductal adenocarcinoma (PROPAN): systematic review and shared decision‐making programme using decision tables

Abstract

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.

The use and clinical outcome of total pancreatectomy in the United States, Germany, the Netherlands, and Sweden

“…For example, the prophylactic total pancreatectomy program for patients with a very high risk of developing pancreatic cancer (ie, main-duct IPMN). 28 In patients with benign disease, an important role is reserved for islet autotransplantation. Another significant difference among the countries was the rate of reoperation.…”

Hereditary pancreatic cancer

“…Conversely, in the recent years, medical developments have led to better control of total pancreatectomy treatment and a trend toward low complication and mortality rates. Therefore, in Europe, it has been suggested that the decision program of prophylactic total pancreatectomy could be useful in high-risk individuals of pancreatic cancers such as hereditary pancreatitis and IPMN with STK11/LKB1 or CDKN2A pathogenic variants [76].…”

Risk stratification tools for branch‐duct intraductal papillary mucinous neoplasms of the pancreas

“…An inspiring shared‐decision program has been designed by Scholten et al., 15 focusing on total pancreatectomy for HRIs to develop pancreatic malignancies. What really stands out from this study is the importance of engaging the patient in the decision‐making process.…”

“…The study does not provide any information regarding the natural history of pancreatic premalignant lesions such as BD-IPMN in HRIs, and the nomogram build to predict the appropriateness of prophylactic pancreatic surgery in HRI following screening appears to be too broad to be routinely applied. 14 An inspiring shared-decision program has been designed by Scholten et al, 15 focusing on total pancreatectomy for HRIs to develop pancreatic malignancies. What really stands out from this study is the importance of engaging the patient in the decisionmaking process.…”