Close
Title:
Outcomes for childhood cancer survivors and their siblings: a national data linkage study using ECHILD
Supervisors:
Katie Harron and Ruth Blackburn
Project Description:
Background
Around 1600 children are diagnosed with cancer each year in England. There has been enormous progress over recent decades in childhood cancer survival worldwide. However, survivors of cancer face ongoing challenges throughout childhood, including physical and cognitive effects, and psychosocial effects arising from their cancer or cancer treatment. They are also more likely to suffer from mental health conditions. Siblings of children diagnosed with cancer also frequently report difficulties at school. However, there is very little quantitative evidence investigating outcomes in siblings of children with cancer. Recent developments in data linkage now mean that it is possible to evaluate longitudinal educational and mental health outcomes for children with cancer and their siblings, through the ECHILD database (which links health and education records for 20 million children in England).
Aim
The aim of this study is to evaluate mental health outcomes for childhood cancer survivors, and educational outcomes (including absences, attainment and Special Educational Needs [SEN]) for siblings of cancer survivors.
Objectives:
1. To evaluate the association between childhood cancer and mental health conditions, including stress-related presentations at school age
2. To evaluate how developmental outcomes, including school attainment, absences and SEN, of siblings of children with cancer compare to those of children whose siblings have not had cancer
3. To explore the wider determinants of outcomes in both children with cancer and their siblings, including cancer treatment type, cancer-related mortality, and sociodemographic risk factors
Methods
We will use ECHILD data, which links hospital and school records for all children born in England since 1984. We will create cancer phenotypes based on diagnosis codes to identify a cohort of children up to age 16 with cancer (and specific diagnoses). We will obtain mental health outcomes from inpatient hospital records and through linkage with Mental Health Services data. Outcomes for siblings of children with cancer will include school attainment, SEN and absences.
We will use statistical models to evaluate outcomes, exploring relevant confounders (e.g. ethnicity, deprivation, birth characteristics) and clustering of outcomes within schools. We will explore the use of quasi-experimental approaches (e.g. propensity score matching or target trial emulation) to compare outcomes for children with and without cancer (or their siblings).
Timeline
Months 1-6: Review of the literature on developmental and mental health outcomes for children with cancer and their siblings
Months 7-12: Creation of analysis cohort; data-cleaning; identification of cases; Patient and Public Involvement and Engagement (PPIE).
Months 13-18: Analysis and write-up for RQ1.
Months 19-24: Analysis and write-up for RQ2.
Months 25-36: Analysis and write-up for RQ3; dissemination; PPIE.
Contact Information:
Katie Harron