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

Ekaterina Aleshchenko,Pietro Trocchi,Enno Swart,Claudia Spix,Thorsten Langer,Katja Baust,Gabriele Calaminus,Peter Ihle,Jutta Küpper-Nybelen,Patrik Dröge,Dirk Horenkamp-Sonntag,Ursula Marschall,Melanie Klein,Christian Lüpkes,Christian Apfelbacher
21. Deutscher Kongress für Versorgungsforschung
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 about1.the current state of follow-up care,2.the occurrence of actual late effects,3.survivors’ adherence to existing follow-up guidelines, and4.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
September / 2022
German Medical Science GMS Publishing House
Deutsches Netzwerk Versorgungsforschung e. V.
Deutscher Kongress für Versorgungsforschung
Versorgung, Versorgungsbedarf und Versorgungsbedürfnisse von Personen nach einer Krebserkrankung im Kindes- oder Jugendalter