Increased incidence, survival, and registration quality of primary hepato‐pancreato‐biliary cancers in the Netherlands Cancer Registry

Given the poor survival and relatively poor performance of hepato-pancreato-biliary (HPB) cancers on data quality indicators for cancer registries, we assessed trends in incidence, survival, and data quality of HPB cancers within the Netherlands Cancer Registry (NCR). All primary solid liver, gallbladder, biliary tract, and pancreatic cancers (topography C22-23-24-25) diagnosed between 1989 and 2022 were included (n = 109,552). Cancer mortality data were obtained from Statistics Netherlands. For incidence and mortality, revised European Age-Standardised Rates, and for survival, age-standardised 5-year relative survival (AS-5yRS) were calculated. Over time, incidence rates increased for liver (males: 3.0 to 8.2/100,000; females 1.2 to 3.9/100,000), pancreatic (males: 15.8 to 18.5/100,000; females: 11.1 to 15.3/100,000), and biliary tract cancers in males (3.9 to 4.9/100,000; not females: 3.3 to 2.9/100,000). Gallbladder cancer incidence decreased until 2005 (males: 1.5 to 0.8/100,000, females 4.0 to 1.5/100,000). Mortality trends mirrored incidence patterns, with smaller increases. AS-5yRS improved across all HPB cancers with the largest increase in liver (males: 3.4% to 20.8%; females: 6.7% to 18.3%) and pancreatic cancers (males: 2.3% to 10.4%; females: 3.5% to 11.3%). Since 2010, survival gains for gallbladder (males: 8.4% to 16.3%; females: 12.2% to 15.8%) and biliary tract cancers (males: 11.7% to 19.1%; females: 10.7% to 15.6%) have stagnated. Mortality-to-Incidence ratios versus 5-year relative survival for liver and pancreatic cancers improved toward equilibrium. Data quality improved (e.g., autopsy, unspecified morphology) or remained stable (multiple primaries). Both incidence and survival rates of primary HPB cancers have increased over time. Increased completeness of incidence data was attributed to changed notification sources.