Education and longer-term health outcomes for childhood cancer survivors : linkage of cancer registration data to the ECHILD database for use by UK researchers

Background Studies of the educational and longer-term health outcomes of childhood cancer survivors have to date been limited by a lack of power, sub-national or self-selected coverage, attrition, and short follow up.

Aims We will create a longitudinal, population-level database of hospital and education records linked with childhood cancer registrations data.

We aim to quantify the difference in academic attainment trajectories and school support (including Special Educational Needs) up to age 16, and hospitalisations and mortality into adulthood, between childhood cancer survivors and healthy peers.

Methods We will link national cancer registration data with existing linked health and education data captured for 20 million children in ECHILD.

ECHILD is a population-level longitudinal linked dataset capturing information from NHS hospitals and state-schools in England for children born since 1984.

To evaluate longer-term health outcomes and differences in academic attainment trajectories, we will establish a set of birth cohorts to assess outcomes at a range of ages at diagnosis, for a range of lengths of follow up.

Analyses will be stratified by the three largest cancer groups (leukaemia, brain and central nervous system tumours, and lymphomas) and all other cancers combined. Birth-year comparison groups selected within ECHILD will comprise children without a cancer diagnosis. We will explore differences by treatment, cancer type and stage, and age at diagnosis.

We will evaluate how differences have changed over time, and measure inequalities by sex, ethnicity, deprivation and geography.

Outcomes will include standardised attainment measures, Special Educational Needs provision, and absences at ages 5-16, and hospitalisations and mortality into adulthood. Patients and the public will be involved throughout the project.

We will compare our findings to other relevant literature e.g. from the NIHR funded HOPE study which is measuring hospital use, educational attainment, and SEN provision for children with a range of other health conditions.

How the results of this research will be used The findings from our study will document the educational and longer-term health complications of survivors of childhood cancer, complementing existing smaller studies on which treatments allow people to lead better and more fulfilling lives.

Since we are using population data, the participants in our study reflect everyone who is affected by cancer, including harder to reach groups. Our project will create a legacy dataset that expands on ECHILD’s existing infrastructure. The linked cancer registry data will be made available to accredited researchers using the ECHILD platform.