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21. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

05.10. - 07.10.2022, Potsdam

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VersKiK – Versorgung, Versorgungsbedarf und Versorgungsbedürfnisse von Personen nach einer Krebserkrankung im Kindes- oder Jugendalter: Studiendesign

Meeting Abstract

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  • Ekaterina Aleshchenko - Otto-von-Guericke Universität, Medizinischen Fakultät, Institut für Sozialmedizin und Gesundheitssystemforschung, Magdeburg, Deutschland
  • Pietro Trocchi - Otto-von-Guericke Universität, Medizinischen Fakultät, Institut für Sozialmedizin und Gesundheitssystemforschung, Magdeburg, Deutschland
  • Enno Swart - Otto-von-Guericke Universität, Medizinischen Fakultät, Institut für Sozialmedizin und Gesundheitssystemforschung, Magdeburg, Deutschland
  • Claudia Spix - Universitätsmedizin Mainz der Johannes Gutenberg-Universität Mainz, Institut für Medizinische Biometrie, Epidemiologie und Informatik, Mainz, Deutschland; Mathias Voigt Universitätsmedizin Mainz der Johannes Gutenberg-Universität Mainz, Institut für Medizinische Biometrie, Epidemiologie und Informatik, Mainz, Deutschland
  • Thorsten Langer - Universität zu Lübeck, Klinik für Kinder- und Jugendmedizin, Abteilung für Pädiatrische Onkologie und Hämatologie, Lübeck, Deutschland
  • Katja Baust - Rheinische Friedrich-Wilhelms-Universität Bonn, Universitätsklinikum Bonn, Zentrum für Kinderheilkunde / Abteilung für Pädiatrische Onkologie und Hämatologie, Bonn, Deutschland
  • Gabriele Calaminus - Rheinische Friedrich-Wilhelms-Universität Bonn, Universitätsklinikum Bonn, Zentrum für Kinderheilkunde / Abteilung für Pädiatrische Onkologie und Hämatologie, Bonn, Deutschland
  • Peter Ihle - Universität zu Köln, Universitätsklinikum Köln, PMV forschungsgruppe, Köln, Deutschland
  • Jutta Küpper-Nybelen - Universität zu Köln, Universitätsklinikum Köln, PMV forschungsgruppe, Köln, Deutschland
  • Patrik Dröge - AOK-Bundesverband GbR, Wissenschaftlichen Institut der AOK, Berlin, Deutschland
  • Dirk Horenkamp-Sonntag - Techniker Krankenkasse, Hamburg, Deutschland
  • Ursula Marschall - BARMER, Berlin, Deutschland
  • Melanie Klein - DAK Gesundheit Hamburg, Hamburg, Deutschland
  • Christian Lüpkes - OFFIS e.V., Oldenburg, Deutschland
  • Christian Apfelbacher - Otto-von-Guericke Universität, Medizinischen Fakultät, Institut für Sozialmedizin und Gesundheitssystemforschung, Magdeburg, Deutschland

21. Deutscher Kongress für Versorgungsforschung (DKVF). Potsdam, 05.-07.10.2022. Düsseldorf: German Medical Science GMS Publishing House; 2022. Doc22dkvf172

doi: 10.3205/22dkvf172, urn:nbn:de:0183-22dkvf1724

Published: September 30, 2022

© 2022 Aleshchenko et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.

Outline

Text

About 2,100 children and young adults below age 18 are diagnosed with cancer in Germany each year [1]. Around two-thirds of all childhood cancer survivors suffer from at least one late effect in the course of their lives, directly or indirectly associated with the cancer itself or its treatment. Research of late effects is typically based on a single data source (either on self-report, or clinical records and/or cancer registries data), limiting comprehensive evaluation.

Specialized follow-up guidelines were developed both on national and international level to identify and, optimally, reduce late effects. However, implementation of current German follow-up guidelines is challenging due to organisational reasons or limited consideration of psychosocial needs of survivors.

The overarching aim of the study is to investigate the follow-up care and care needs of individuals who survived cancer in childhood or adolescence. Main research goal are to provide German-wide information about

1.
the current state of follow-up care,
2.
the occurrence of actual late effects,
3.
survivors’ adherence to existing follow-up guidelines, and
4.
their actual follow-up needs.

A further aim is to investigate potential limitations of selected follow-up guidelines and to suggest improvements to them.

The mix-methods, non-interventional study will analyse claims data from all German statutory health insurance funds in combination with register data from the German Childhood Cancer Register. Subjective needs of survivors, their informal caregivers and health professionals involved will be considered through comprehensive data analyses from interviews and focus groups with them.

The present study aims to research the actual needs of individuals after cancer in childhood or adolescence – physical, psychological and organisational – in order to improve existing follow-up guidelines.

The suggested study design should provide representative evidence about late effects of childhood cancer based on the largest available body of unselected health care data in Germany via patient-based data linkage and is an attempt to overcome limitations of existing research. These findings are going to be supplemented with methodologically well-founded evidence from interviews with patients, informal caregivers, and healthcare professionals in the cross-sectoral care of childhood cancer survivors.

Practical implication: To suggest potential improvement and extensions to selected follow-up guidelines.

Funding: Innovationsfonds/Versorgungsforschung; 01VSF19013

Outline

References

1.
Erdmann F, Kaatsch P, Grabow D, Spix C. German Childhood Cancer Registry - Annual Report 2019 (1980-2018). Maiz: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI) at the University Medical Center of the Johannes Gutenberg University Mainz; 2020.