Characterising childhood cancer survivors in Germany: A retrospective observational study on demographic, clinical, and healthcare utilisation patterns

Background As survival rates for childhood cancer improve, understanding long-term outcomes and healthcare needs of childhood cancer survivors (CCS) is essential. In Germany, such data have been limited. Objective This study aimed to describe demographic and clinical characteristics of a long-term CCS cohort and assess healthcare utilisation patterns based on cancer registry and statutory health insurance (SHI) claims data. Methods The VersKiK study linked GCCR data with claims from 13 SHI providers, covering 69% of the German statutorily insured population. The analysis of healthcare utilisation included 11,863 CCS diagnosed since 1991-2011, known to be alive in 01/2017 and maintained uninterrupted statutory health insurance coverage during 2017-2021.Healthcare utilisation was compared to a 1:3-matched comparison group (matching factors insurance duration, sex, birth year, and region). Results Long-term CCS had significantly higher healthcare utilisation across all metrics. They experienced 1.1 to 5.1 times more outpatient visits, hospital stays, medication prescriptions, and episodes of work incapacity than the control group. Utilisation varied considerably by cancer type, age at diagnosis, sex, and region. Survivors of CNS tumours, bone tumours, and soft tissue sarcomas showed the highest service use. Differences in utilisation between survivors and controls were greater among younger than older survivors. Conclusions This large, population-based record linkage study highlights significant differences in healthcare use between CCS and the general population, emphasising the need for evidence-based policies and tailored clinical care models. Further detailed analyses of claims data in this context can guide improvements in long-term care access, coordination, and outcomes for survivors.