[Recruitment of a cohort to investigate medical follow-up care after childhood cancer: Record-Linkage between the German Childhood Cancer Registry and statutory health insurance companies (VersKiKCohort)].

Abstract

The VersKiK-study is based on a record-linkage between the German Childhood Cancer Registry (GCCR) and claims data from statutory health insurances (SHI) in order to investigate the frequency of late effects and long-term medical care among pediatric cancer survivors.GCCR defined a basic population of approximately 50,000 former patients with cancer in childhood or adolescence (years of diagnosis 1991-2021) who survived until 1.1.2017. Encrypted GCCR identity data were stochastically linked with encrypted identity data from 13 SHI. For those cancer patients who could be identified in SHI records (study population), claims data covering 2017-2021 were added and combined with basic GCCR information on cancer diagnosis. A comparison between identified cancer patients and those who were not identified in SHI records was made to evaluate the representativeness of the study population for quantitative analyses.A total of 26,127 former childhood cancer patients were identified in SHI data. Since the participating SHI represent approximately two-thirds of the German population, the record linkage could be judged as satisfactory (84% matching rate). We found no significant differences between the study population and the non-matched group regarding age, sex, primary cancer diagnosis, and year of diagnosis.The identified study population is considered representative for survivors of childhood cancer in Germany.