Validity of the Pancreatic Cancer Registry in Southern Denmark.
Cara Manmeet Bhuller, Michael Bau Mortensen, Henriette Engberg, Claus Wilki Fristrup
Author Information
Cara Manmeet Bhuller: Division of Hepato-Pancreatic-Biliary Surgery, Odense Pancreas Centre (OPAC), Department of Surgery, Odense University Hospital.
Michael Bau Mortensen: Division of Hepato-Pancreatic-Biliary Surgery, Odense Pancreas Centre (OPAC), Department of Surgery, Odense University Hospital.
Henriette Engberg: The Danish Clinical Quality Program and Clinical Registries (RKKP), Denmark.
Claus Wilki Fristrup: Division of Hepato-Pancreatic-Biliary Surgery, Odense Pancreas Centre (OPAC), Department of Surgery, Odense University Hospital.
INTRODUCTION: The Danish Pancreatic Cancer Database (DPCD) uses data from the Danish National Patient Registry (DNPR) and includes patients with pancreatic carcinomas, duodenal and ampullary cancers. Due to the aggressive nature of pancreatic cancer, some patients never receive diagnostic work-up at a hepato-pancreatico-biliary centre. The aim of this study was to explore the validity of the registration of the pancreatic cancer diagnosis for patients living in the Region of Southern Denmark reported in the DNPR but not included in the DPCD. METHODS: This study is a descriptive analysis of a historical cohort of patients registered with a diagnosis of pancreatic cancer (DC 25.0-25.9, DC 24.1, DC 17.0, excluding DC 25.4) from 1 July 2019 to 30 June 2022, in the DNPR but with no registration in the DPCD. RESULTS: We identified 155 patients with a relevant diagnosis in the DNPR who were not included in the DPCD. A total of 62 patients (40%) represented potentially valid cases of pancreatic cancer, whereas 73 patients (47%) had pNET and 20 patients (13%) had an entirely different diagnosis. Only seven patients (11%) of the potentially valid pancreatic cancer group and 4.5% of the total study cohort had a histology-verified diagnosis of pancreatic cancer. The DNPR contained (93/944) 10% with an incorrect diagnosis of pancreatic cancer and 6% with an uncertain diagnosis. CONCLUSIONS: This study demonstrates a high level of completeness for the DPCD in the Region of Southern Denmark. Invalid registration of the pancreatic cancer diagnosis is an important limitation in using the DNPR, which is the only data source for identifying patients with pancreatic cancer in Denmark. FUNDING: None. TRIAL REGISTRATION: Not relevant.
