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.

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.