The Cohort of Long-term Survivors at the German Childhood Cancer Registry

Abstract

Background: With the increasing number of long-term survivors among patients diagnosed with cancer during childhood, questions concerning late effects have become a major research topic. To ascertain late effects, it is necessary to contact former patients. An essential requirement for such studies is a long-term surveillance (LTS) of former childhood cancer patients in their adolescence and their adulthood. The paper describes the role of the German Childhood Cancer Registry (GCCR) in LTS. A cohort of long-term survivors has been built up over the years. The characteristics of this LTS cohort and strategies for further improvement of LTS will be presented.

Patients and Methods: Since 1980 the GCCR systematically ascertains all malignant neoplasms and benign brain tumours in children under the age of 15 years at diagnosis. Participants are followed up actively by the treating hospitals and the clinical study groups in the first years after diagnosis, and by the GCCR thereafter. Late effects are accessed within the Scientific Society for Paediatric Oncology and Haematology (GPOH) of different groups with different focal points. Those groups are the GCCR (secondary malignant neoplasms), LESS (late effects after chemotherapy), RiSK (late effects after radiotherapy), and the working group on quality of life (quality of life and data on life circumstances). Additionally, the GCCR provides logistics for contacting patients during LTS. The LTS is supported by a recent basic publication (“position paper”) by the GPOH. Newly diseased cancer cases are reported to the GCCR very completely. The GCCR contains mainly epidemiological data. Accessorily, the GCCR ascertains a minimum of data for each patient which enables population-based studies involving long-term survivors of childhood cancer.

Results: Out of 37 291 children diagnosed with cancer between 1980 and 2004, 8 896 died (until spring 2007). From those not deceased, 21 987 (77.4%) can be followed up further (i.e. current address is known). For about 70% of the patients in the LTS cohort, follow-up data are available and not older than 5 years. Our experience shows that about 80% of former childhood cancer patients agree to continued data storage at the GCCR, 4% explicitly refuse their consent, the remaining do not answer. LTS for patients with leukemia and lymphomas is particularly complete, whereas for patients with brain tumours it is less complete.

Conclusions: The LTS is considered highly relevant concerning aspects of clinical quality assurance and epidemiological research. The GCCR can guarantee a continuing development and improvement of existing procedures for LTS. The GCCR expects to achieve contacting a high percentage of former childhood cancer patients also in future LTS, even after long periods of time.

Zusammenfassung

Hintergrund: Mit der steigenden Zahl an Langzeitüberlebenden unter den ehemaligen Krebspatienten im Kindesalter ist es von großer Relevanz, Fragen zu Spätfolgen wie nach Organtoxizitäten, Sekundärmalignomen, Lebensqualität, und Lebensumständen zu stellen. Eine wichtige Voraussetzung für Studien im Rahmen der Langzeitnachbeobachtung (LZNB) ist eine Nachbeobachtung mit direkter Kontaktierung ehemaliger Kinderkrebspatienten. In diesem Artikel soll die derzeitige Rolle des Deutschen Kinderkrebsregisters (DKKR) innerhalb der LZNB beschrieben werden. Die am DKKR bestehende Kohorte Langzeitüberlebender und Strategien für die weitere Entwicklung der LNZB werden dargestellt.

Patienten und Methoden: Das DKKR registriert seit 1980 systematisch alle malignen Neoplasien bis zum 15. Geburtstag bei Diagnose. Ehemalige Kinderkrebspatienten werden in den ersten Jahren nach der Diagnose aktiv von den behandelnden Kliniken und den Therapieoptimierungsstudien nachbeobachtet und in der weiteren LZNB durch das DKKR. Spätfolgen werden innerhalb der Gesellschaft für pädiatrische Onkologie und Hämatologie (GPOH) mit unterschiedlichen Schwerpunkten von verschiedenen Strukturen erhoben. Diese Strukturen sind das DKKR (Zweitmalignome), LESS (Spätfolgen nach Chemotherapie), RiSK (Spätfolgen nach Radiotherapie), und die Arbeitsgruppe Lebensqualität (Lebensqualität und Lebensumstände). Das DKKR stellt in der LZNB darüber hinaus die Logistik bereit, um Patienten kontaktieren zu können. Das DKKR verfügt über eine repräsentative Datenbasis, ergänzt um ein Minimum an Informationen, um Studien unter Einbeziehung Langzeitüberlebender in Deutschland durchführen zu können.

Ergebnisse: Von 37 291 zwischen 1980 und 2004 diagnostizierten Kindern, starben bis Frühjahr 2007 8 896; 21 987 ehemalige Patienten können weiterhin nachbeobachtet werden. Das entspricht 77.4% aller jemals registrierten und nicht als verstorben bekannten ehemaligen Patienten. Bei etwa 70% dieser Patienten in der LZNB-Kohorte liegen aktuelle Informationen aus den letzten fünf Jahren vor. Im Rahmen der LZNB machte das DKKR die Erfahrung, dass etwa 80% der ehemaligen Krebspatienten ihre persönliche Einwilligung zu weiterer Datenspeicherung am DKKR geben, 4% der Patienten verweigern explizit die weitere Datenhaltung am DKKR, die übrigen antworteten nicht.

Schlussfolgerung: Die LZNB hat einen hohen Stellenwert in Bezug auf klinische Qualitätssicherung und epidemiologische Fragestellungen. Mit der Etablierung der LZNB in die Routinen des DKKR, erhoffen wir uns eine kontinuierliche Weiterentwicklung und Verbesserung der bereits existierenden Abläufe in der LZNB.

Key words

childhood cancer - cancer registry - follow-up - survivor - late effects - long-term surveillance

Schlüsselwörter

Kinderkrebs - Krebsregister - Langzeit-Follow-up - Spätfolgen - Langzeitnachbeobachtung

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