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DOI: 10.1055/a-2536-2966
Bildung einer Kohorte zur Untersuchung der medizinischen Versorgung nach einer Krebserkrankung im Kindes- oder Jugendalter (VersKiK-Kohorte) mittels Record-Linkage zwischen Deutschem Kinderkrebsregister und gesetzlichen Krankenkassen
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)
Zusammenfassung
Hintergrund
Im Projekt VersKiK sollen durch Verlinkung von Daten des Deutschen Kinderkrebsregisters mit Routinedaten gesetzlicher Krankenkassen die Art und Häufigkeit von Spätfolgen und die medizinische Versorgung von Langzeitüberlebenden nach Krebs im Kindes-oder Jugendalter untersucht werden.
Methodik
Das Deutsche Kinderkrebsregister definierte eine Grundgesamtheit von ca. 50 000 Personen nach Krebserkrankung im Kindes- oder Jugendalter der Diagnosejahre 1991–2021 (Überleben bis mindestens 1.1.2017). Die Identifizierung der Kinderkrebspatient:innen (VersKiK-Kohorte) im Datenbestand der 13 beteiligten Krankenkassen erfolgte über ein kryptographiertes stochastisches Record-Linkage. Die Kassendaten umfassen den Beobachtungszeitraum 2017–2021. Durch den Vergleich von gematchten und nicht gematchten DKKR-Patient:innen wird die Repräsentativität der VersKiK-Kohorte für quantitative Analysen geprüft.
Ergebnisse
Insgesamt wurden im Record-Linkage 26 127 Kinderkrebspatient:innen im Datenbestand der beteiligten Kassen identifiziert (Match). Bei einer geschätzten Abdeckung der beteiligten Krankenkassen von ca. zwei Drittel der deutschen Bevölkerung entspricht dies etwa 84% der erwarteten Trefferzahl. Hinsichtlich des Diagnosejahrs, Alters, Geschlecht und Art der Primärdiagnose zeigten sich keine relevanten Unterschiede zwischen Match und Non-Match-Gruppe.
Schlussfolgerungen
Die VersKiK-Kohorte ist repräsentativ für Überlebende nach Krebs im Kindesalter in Deutschland.
Abstract
Background
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.
Methods
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.
Results
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.
Conclusions
The identified study population is considered representative for survivors of childhood cancer in Germany.
Schlüsselwörter
pädiatrische Krebserkrankungen - medizinische Versorgung - Registerstudie - Record Linkage - RepräsentativitätKeywords
pediatric cancer - follow-up care - registry-based study - record-linkage - representativeness‡ geteilte Autorenschaft
Publication History
Received: 28 May 2024
Accepted after revision: 13 December 2024
Article published online:
25 March 2025
© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/).
Georg Thieme Verlag KG
Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany
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