The Population-Level Surveillance of Childhood and Adolescent Cancer and Its Late Effects in Europe with an Example of an Effective System at the Slovenian Cancer Registry.
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BACKGROUND: The registry-based collection of detailed cancer and late effect (LE) data in childhood and adolescent cancer (CAC) is rarely explored. AIM: We aimed to provide an overview of CAC registration practices in Europe and share a Slovenian example. METHODS: We distributed a questionnaire among European cancer registries on disease, treatment and LE registration and present the system at the Slovenian Cancer Registry along with an example of retrospectively collected LE data from a cohort of central nervous system tumour survivors from 1983 to 2000. Kaplan-Meier and Cox regression were used to calculate the LE incidence. RESULTS: Out of 27 responding registries, over 80% registered cancer type, vital status, death and second primary cancer data. Less than 20% registered cumulative doses of radiation and systemic therapy or progressions. Only three registered LEs. The obstacles in setting up LE collection in registries are a lack of standardization in the variable sets, definitions and methods of collection. In the retrospective cohort, neurological and endocrine LEs were most common. Females had a higher risk of endocrine LEs (HR of 1.89; 95% CI of 1.08-3.31), while patients treated with radiotherapy had higher risks of endocrine (3.47; 1.80-6.69), musculoskeletal and skin LEs (3.16; 1.60-6.26) and second primary cancers (2.85; 1.18-6.75). CONCLUSIONS: Standardization and harmonization are necessary to promote detailed CAC and LE registration.