Data resource profile: The Life and health After Childhood cancEr (LACE) project.

INTRODUCTION

In Australia, around 85% of children survive childhood cancer. Yet, up to 80% of survivors experience subsequent adverse health conditions called late effects, largely attributed to cancer treatment. The LACE study is a population-based linked data resource that aims to facilitate the investigation of childhood cancer and its treatment and the impact on late effects for childhood cancer survivors.

METHODS

The study links the Australian Childhood Cancer Registry to administrative cross-jurisdictional health and education data to enable ongoing follow-up of outcomes for childhood cancer survivors. The study population includes all Australian children aged less than 15 years, diagnosed with cancer 1983-2021, and comparison groups comprising siblings of childhood cancer patients and a random sample of children from the general population frequency matched by age, sex and residential location to cases.

RESULTS

To date, the case cohort includes 25,226 children diagnosed with cancer, with longest follow-up to the age of 53 years. The most commonly diagnosed childhood cancers were leukaemia and related cancers (n=8182, 32.4%), followed by central nervous system and related cancers (n=5850, 23.2%), and lymphomas and reticuloendothelial neoplasms (n=2568, 10.2%). Overall, 16,314 (64.7%) children underwent chemotherapy, 5555 (22.0%) received radiotherapy and 7300 (28.9%) had surgical treatment for their cancer, with immunotherapy use reported for 641 (2.5%), hormonal therapy for 4549 (18.0%) and ancillary therapies for 2581 (10.2%). A total of 19,321 (76.6%) cases were alive at the end of the study.

CONCLUSION

This new comprehensive national data linkage resource represents a valuable asset that will facilitate research to identify the risk of late effects and effective follow-up care to inform counselling patients and their families, as well as guidelines, models of care and personalised follow-up care plans. Further, it will enable identification of inequities in healthcare access and outcomes across population sub-groups.