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. 2025 Feb 8;17(4):580.
doi: 10.3390/cancers17040580.

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

Ana Mihor  1   2 , Carmen Martos  3   4 , Francesco Giusti  3 , Lorna Zadravec-Zaletel  2   5 , Sonja Tomšič  1 , Katarina Lokar  1 , Tina Žagar  1 , Mojca Birk  1 , Nika Bric  1 , Vesna Zadnik  1   2
Affiliations

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

Ana Mihor et al. Cancers (Basel). .

Abstract

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.

Keywords: cancer registry; childhood and adolescent cancer; late effects; population-level surveillance; survivors.

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Conflict of interest statement

The authors declare no conflicts of interest. The funders had no role in the design of the study; in the collection, analyses or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

Figures

Figure 1
Figure 1
Number and percentage of all answers (n = 27) on data availability in cancer registries by type of data.
Figure 2
Figure 2
Data sources and variables of the Slovenian Childhood Cancer Clinical Registry (SCCCR). Red items represent the expanded set of variables in the SCCCR, whereas blue items were already in place in the Slovenian Cancer Registry before the introduction of the SCCCR.
Figure 3
Figure 3
Cumulative incidence curves for somatic late effects and second primary cancers.
See this image and copyright information in PMC

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