Artikel
Database for studies on long-term survivors after childhood cancer and quality of the long-term surveillance
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Veröffentlicht: | 6. September 2007 |
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Gliederung
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Objective: The German Childhood Cancer Registry (GCCR) can be seen as a cohort of almost all former childhood cancer cases. It is followed for mortality, late effects, secondary malignant neoplasms, and quality of life [Ref. 1], [Ref. 2], [Ref. 3]. The aim of this analysis is to assess the completeness and quality of the follow-up data comparing former patients with up-to-date follow-up information (update within the last 5 years) to former patients with less up-to-date follow-up information.
Method: Since 1980 the GCCR systematically collects all malignant cancers below the age of 15 years at diagnosis [Ref. 1]. Participants are followed up actively, by the treating hospitals and the clinical studies in the first years after diagnosis, and by the GCCR in the later long-term surveillance. This is supported by a recent position paper of the scientific Society for Paediatric Oncology and Haematology (GPOH) [Ref. 4].
Results: Out of the more than 28,000 children, who were diagnosed with cancer from 1980-1999, approximately 7,500 died, and more than 18,000 can be followed up further (i.e. name and address are known and patients are not lost to follow-up); these are more than 64% of all ever registered patients.
From more than 70% of the patients in this follow-up cohort, we have up-to-date information from the last 5 years. The active follow-up is most successful for patients with leukemias, lymphomas, and sympathetic nervous system tumours. The quality of follow-up depends primarily on diagnosis. The characteristics of the follow-up cohort and strategies for further improvement of follow-up shall be presented.
Conclusion: We expect this cohort to be representative for the long-term surveillance of former childhood cancer patients in Germany in the long run.
Acknowledgements: The study is supported by the German Children's Cancer Foundation and the Ministry of Education and Research in the framework of the Competence Network Paediatric Oncology and Haematology.
References
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- Positionspapier der GPOH zu (Langzeit-) Nachbeobachtung, (Langzeit) Nachsorge und Spätfolgenerhebung bei pädiatrisch-onkologischen Erkrankungen. http://www.kinderkrebsinfo.de/e2260/e13266/e13270/PositionspapierderGPOH_2006-6-08_ger.pdf. Stand 8.3.2007.