Strategy for Long-Term Surveillance at the German Childhood Cancer Registry – an Update

 

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Abstract

Background: The objective of this paper is to provide information about the quality (e. g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR).

Methods: The GCCR contacts parents or patients to collect and update information on a minimal set of follow-up health status data (e. g. late relapses, subsequent neoplasms, current address) and exchanges this information regularly with the appropriate clinical trials.

Results: Between 2006 and 2010, GCCR approached a total of about 20 000 patients (contact at the age of 16 years, inquiry concerning the health status) in the context of long-term surveillance. 11 000 addresses of former patients had to be researched via municipal registrar's offices. The response rates ranged from 56% to 68%, the research in municipal offices provided 93–96% valid addresses. Of 46 115 patients diagnosed between 1980 and 2009, 25 283 are in long-term surveillance in 2010.

Discussion: Long-term surveillance requires considerable logistic effort at GCCR and requires that thousands of letters be mailed each year in order to ensure regularly updated information. Long-term surveillance is indispensable for a better understanding of late effects, subsequent neoplasms and quality of life of former childhood cancer patients.

Zusammenfassung

Hintergrund: Aufgrund der am Deutschen Kinderkrebsregister (DKKR) etablierten Strukturen werden Aussagen zur Qualität (z. B. Vollständigkeit, Response) der Langzeitnachbeobachtung (LZNB) in der deutschen pädiatrischen Onkologie und Hämatologie gemacht.

Methoden: Das DKKR aktualisiert durch Kontaktaufnahme mit Eltern und Patienten kontinuierlich Minimalinformationen zum Gesundheitszustand (z. B. Spätrezidive, sekundäre Neoplasien, die aktuelle Anschrift) und tauscht diese Informationen regelmäßig mit den Therapieoptimierungsstudien aus.

Ergebnisse: Zwischen 2006 und 2010 wurden insgesamt ca. 20 000 Patienten im Rahmen der LZNB durch das DKKR kontaktiert (persönliche Kontaktaufnahme, Anfragen zum Gesundheitszustand). Die Rücklaufraten lagen zwischen 56–68%. 11 000 aktuelle Adressen der ehemaligen Patienten wurden dazu über Einwohnermeldeämter recherchiert. Von den 46 115 zwischen 1980 und 2009 diagnostizierten Patienten befinden sich im Jahr 2010 25 283 in der LZNB.

Diskussion: Um die Aktualisierung minimaler Informationen regelmäßig zu gewährleisten, ist ein hoher logistischer Aufwand mit jährlichem Versand Tausender Briefe erforderlich. Die Langzeitnachbeobachtung ermöglicht ein besseres Verständnis der Spätfolgen, sekundären Neoplasien und der Lebensqualität von ehemals an Krebs erkrankten Kindern.

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Correspondence

Dr. Desiree Grabow

German Childhood Cancer

Registry (GCCR)

Institute for Medical

Biostatistics, Epidemiology and

Informatics (IMBEI)

University Medical Center

Mainz

55101 Mainz

Germany

Phone: +49/6131/17 31 09

Fax: +49/6131/17 44 62

Email: desiree.grabow@unimedizin-mainz.de

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