The Dutch Pancreatic Cancer Project Towards nationwide improvement of outcomes

To facilitate research and to ultimately improve outcomes on a nationwide level, the Dutch Pancreatic Cancer Project (PACAP) was launched in 2013. PACAP was an initiative of the national multidisciplinary Dutch Pancreatic Cancer Group (DPCG). PACAP includes several registries; the Netherlands Cancer Registry (NCR), Patient Reported Outcome Measures (PROMs), the surgical Dutch Pancreatic Cancer Audit (DPCA), the Dutch Pancreas Biobank (PancreasParel), and an online expert panel. This thesis describes several projects all aimed to improve outcomes for all patients with pancreatic cancer in the Netherlands by identifying differences in outcomes and points of improvement in care. First, it was investigated whether nationwide compliance to the Dutch pancreatic cancer guideline changed in the six years since its introduction. This provided a backbone for more extensive research through the different PACAP registries in Part I through the NCR and PROMs, and in Part II through the DPCA. It was demonstrated that nationwide guideline non-compliance and practice variation exist regarding cancer treatment as well as supportive care for patients with pancreatic cancer. This resulted in differences in patient outcomes, such as procedural complications, survival, and quality of life. Subsequently, a nationwide ‘best-practices’ implementation trial (PACAP-1) was developed and performed. Part III depicts the details on nationwide improvement of outcomes with the study protocol of the PACAP-1 trial and through collaboration within the DPCG.