SEARCHCOHORToncology, pediatrics

cohort·oncology, pediatrics, public health, epidemiology, clinical trial·PMC10587240

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics

Journal of Cancer Research and Clinical Oncology · 14 authors, 8 centres

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TL;DR

Chronic health conditions were found across all risk groups and enrolment was feasible and broadly accepted, supporting nationwide implementation.

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The study implemented a clinical long-term follow-up database for 208 adult childhood cancer survivors aged 18 or older at two German university centres. Chronic health conditions across various organ systems were documented during routine LTFU visits, and CCS were stratified into three risk groups based on individual risk for developing late effects. Enrolment into the database was feasible and broadly accepted. These findings support nationwide implementation of the database to collect clinically evaluated health data for potentially over 40,000 German CCS.

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cohort

SPECIALTY

oncology

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ORIGINAL PAPER

PMC10587240

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics

Journal of Cancer Research and Clinical Oncology

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ABSTRACT

Purpose Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures. To establish a comprehensive knowledge base on CCS’ long-term health in Germany, a database was developed in cooperation with the GCCR. Following a first evaluation phase at two German university centres, this database will be implemented more widely within Germany allowing longitudinal documentation of clinical LTFU data. Methods The feasibility study cohort comprised 208 CCS aged 18 or older whose medical, mental and psychosocial health data were collected during routine LTFU or first clinic visits in adult care. CCS were enrolled from 04/2021 to 12/2022, and data entry was completed by 03/2023. Descriptive data analysis was conducted. All CCS were stratified into three risk groups (RG) based on their individual risk for developing late effects resulting from their respective diagnoses and treatments. Results Chronic health conditions of various organ systems associated with late and long-term effects of cancer therapy affected CCS in all RG supporting the clinical relevance of risk-adapted LTFU. Enrolment into the database was feasible and broadly accepted amongst CCS. Conclusion Implementation of a clinical follow-up care infrastructure and database in Germany will pave the way to collect clinically evaluated and regularly updated health data of potentially over 40,000 German CCS and facilitate future national and international cooperation. Supplementary Information The online version contains supplementary material available at 10.1007/s00432-023-05145-8.

CITATION EXPORT

Madelaine Sleimann, Magdalena Balcerek, Chirine Cytera et al.. Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics. Journal of Cancer Research and Clinical Oncology. (2023). https://doi.org/10.1007/s00432-023-05145-8

AUTHORS

14 · 8 CENTRES

Madelaine Sleimann, Magdalena Balcerek, Chirine Cytera, Franziska Richter, Anja Borgmann-Staudt, Bernhard Wörmann, Lea Louisa Kronziel, Gabriele Calaminus, Ann-Kristin Kock-Schoppenhauer, Desiree Grabow, Katja Baust, Anke Neumann, Thorsten Langer, Judith Gebauer

1https://ror.org/01tvm6f46grid.412468.d0000 0004 0646 2097Medizinische Klinik 1, Abteilung für Endokrinologie, Diabetologie und Stoffwechselmedizin, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Ratzeburger Allee 160, 23538 Lübeck, Germany
2grid.7468.d0000 0001 2248 7639Department of Paediatric Oncology and Haematology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Campus Virchow-Klinikum, Augustenburger Platz 1, Mittelallee 6A, 13353 Berlin, Germany
3grid.412468.d0000 0004 0646 2097Klinik für Kinder- und Jugendmedizin, Pädiatrische Onkologie und Hämatologie, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Ratzeburger Allee 160, Haus A, 23538 Lübeck, Germany
4grid.7468.d0000 0001 2248 7639Department of Haematology, Oncology and Tumor Immunology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Campus Virchow-Klinikum, Augustenburger Platz 1, Mittelallee 11, 13353 Berlin, Germany
5grid.4562.50000 0001 0057 2672Institut für Medizinische Biometrie und Statistik (IMBS), Universität zu Lübeck, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Ratzeburger Allee 160, V24, 23562 Lübeck, Germany
6https://ror.org/01xnwqx93grid.15090.3d0000 0000 8786 803XPädiatrische Hämatologie/Onkologie, Zentrum für Kinder- und Jugendmedizin, Universitätsklinikum Bonn, Venusberg-Campus 1, 53127 Bonn, Germany
7https://ror.org/00t3r8h32grid.4562.50000 0001 0057 2672IT Center for Clinical Research, Lübeck, Universität zu Lübeck, Haus 32, Ratzeburger Allee 160, 23562 Lübeck, Germany
8grid.410607.4Division of Childhood Cancer Epidemiology/German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre of the Johannes Gutenberg University Mainz, 55101 Mainz, Germany