Education and longer-term Health Outcomes for Childhood Cancer Survivors

ECHO-CCS

21 Aug 2024

Award summary

• Funders:
  Cancer Research UK and Children with Cancer UK (jointly)

• Call:
  Data for Children’s and Young People’s Cancer (Data4CYP) Pilot Award

• Dates:
  July 2024 to June 2026 (24 months)

• Funded staff:
  

  • Tony Stone, Data Scientist / Senior Research Fellow (60% WTE, 24 months)
  • RA from July 2025, (100% WTE, 12 months)

Project summary

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

• Aims:

  1. Create (England-wide) population-level, longitudinal database of hospital and education records linked with childhood cancer registrations data

  2. Quantify differences between childhood cancer survivors and peers with no childhood cancer diagnosis, in:

     1. Academic attainment trajectories and school support up to age 16

     2. Longer-term (into adulthood) healthcare utilisation and mortality

Aim a) Linked hospital, education and childhood cancer registration records

• Existing UCL ECHILD programme: A research database linking Education (Department for Education [DfE] supplied) and Health-related (NHS England supplied) records for people in England born since September 1984

• Planned: incorporate, NHS England National Disease Registration Service (NDRS) managed, cancer registration and treatment data into ECHILD (for same cohort)

• Update: On 22 July 2024, DfE and NHS England informed ECHILD project team that they would not facilitate the provision of further data under the existing ECHILD licensing agreement. They may reconsider this position.

• Funder (CRUK) has been informed

• We had already included an alternative approach for Aim b)

Aim b) Quantify differences between people with- and without- a diagnosis of cancer in childhood

• Approach 1: Using birth cohorts in available ECHILD data (i.e. assume full longitudinal healthcare record) identify incident diagnosis of cancer within admitted hospital care data

• Approach 2 (pending data): Use English national cancer registration data

• Investigate differences by: age at diagnosis; sex; ethnicity; area-based deprivation; geography; cancer type (leukaemia; brain and central nervous system tumours; lymphomas; all other cancer types); treatment modality/ies; stage at diagnosis (if available); period (of time).

Aim b) 1) Academic attainment trajectories and school support

Outcomes (generally differing cohorts):

• Academic attainment at Key Stage (KS) 4 conditional on KS2 attainment

• Academic attainment at Early Years Foundation Stage

• Academic attainment at Key Stage 1

• Academic attainment at Key Stage 2 conditional on KS1 performance

• Academic attainment at Key Stage 2 not conditional on KS1 performance

• Academic attainment at Key Stage 4 not conditional on KS2

• School absence rate

• Special Educational Needs (SEN) provision and type (e.g. Enrolment in specialist provision; Education, Health and Care Plan (EHCP) in mainstream school; SEN support in mainstream school; No SEN provision)

Aim b) 2) Longer-term (into adulthood) healthcare utilisation and mortality

• Mortality

• Emergency Department contact rate

• Unplanned admission to hospital rate

• Planned admission to hospital rate

• Outpatient department attendance rate