Gastric cancer completeness in Finnish Cancer Registry and Finnish Patient Registry: a population-based nationwide retrospective cohort study

Abstract

BackgroundGastric cancer is the fourth-leading cause of cancer-related deaths worldwide. The only curative treatment options of gastric cancer are perioperative chemotherapy and surgical resection. Many nationwide registries have high validity and provide vast range of opportunities for registry-based research. Cancer diagnoses in the Finnish Cancer Registry (FCR) are reported by pathology laboratories and clinician forms, while discharge diagnosis codes are reported to the Finnish Patient Registry (HILMO) automatically. Finland is known for complete registries but the completeness of gastric cancer in FCR and HILMO remains unclear.ObjectivesThe aim of this study is to assess the registry coverage for gastric cancer in FCR and HILMO and to explore potential reasons for possible differences between these registries.DesignPopulation-based nationwide retrospective cohort study.ParticipantsAll patients diagnosed with gastric cancer in Finland during 1990 to 2014, with follow-up until 31 December 2019.ResultsOut of 21 468 total gastric cancers reported to either registry, 17 107 (79.7%) had a gastric cancer diagnosis in both registries. A substantial decrease from 88.3% to 83.4% was observed in the proportion of cases reported to FCR over time. The completeness of FCR was estimated at 87%. For HILMO, the completeness was 92.7%. Death due to gastric cancer was most common in those with gastric cancer in both registries (80.8%), and less common in those reported to only FCR (36.3%), followed by those reported to only HILMO (9.3%).ConclusionsThe study indicates that gastric cancer is well captured by both FCR and HILMO but there is an alarming decrease in the proportion of cases captured by the FCR over time. Some gastric cancer diagnoses in HILMO might, however, be misclassified due to cancer diagnoses being assigned based on clinical suspicion.

Comparison of Postoperative Complications After Gastrectomy for Gastric Cancer with Antecolic Versus Retrocolic Reconstruction: A Population-Based Study

“…The Finnish national registries are based on independent and automatic reporting of diagnosis and procedure codes from the hospitals, to hospital discharge registry and also clinicians reporting new cancer cases, enabling dependable patient identification with high coverage. 12 The complication data were collected and categorized comprehensively by specialized surgeons, which increases the quality of the present study. On the other hand, due to the retrospective nature of this study, there is a possibility that some complications may have been missed during the review of patient records.…”

“…The Finnish Cancer Registry and Hospital Discharge Registry were 87% and 92.7% complete for gastric cancer, respectively. 12 Surgically treated patients were identified using Nordic Medico-Statistical Committee (NOMESCO) surgical codes. The identification using both registries by searching for cancer diagnoses and operation codes allows almost 100% completeness on eligible patient identification.…”

Survival trends in gastric cancer patients between 1987 and 2016: a population-based cohort study in Finland

“…However, missing histology records for some patients led to their exclusion from the analysis of confirmed adenocarcinoma cases, and therefore, some selection bias is present in analyses of patients with adenocarcinoma. Another strength includes the highly accurate data retrieved from two independent and complete nationwide registries (FCR and HILMO) [ 19 ], which were combined using the immutable Finnish personal identity numbers assigned to all citizens, ensuring that all cases are captured. There were some missing values for oncological treatment status and tumor stage, and therefore, the estimates concerning chemotherapy patients and stage-specific analyses should be interpreted cautiously.…”

Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data

“…This study has been approved by the ethics committee of the VU University Medical Center and is in accordance with the governance code of the Nivel Primary Care Database, filed under number NZR-003. 19.018. As pseudonymized data were used that were collected for routine administrative registration purposes, the informed consent of the participants was not necessary.…”

“…16 Some countries, such as Italy, have local dementia registries. 17 Besides dementia registries, several countries have other national disease specific registries, such as cancer registries in for instance Norway, Finland and the Netherlands [18][19][20] or diabetes registries in for instance Sweden and Denmark. 21,22 These registries have in common that they use health data of individuals with a specific disease to provide information about quality indicators in care or about the incidence and prevalence of a disease.…”