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  Health and development outcomes and their interaction for children with chronic liver disease: a population-based cohort using novel linkage between health and education records

   GOSH BRC Applied Child Health Informatics Theme (Non-Clinical) PhD Studentships

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  Prof Katie Harron, Dr Ania Zylbersztejn  No more applications being accepted  Funded PhD Project (UK Students Only)

About the Project

Each year in the UK, 400 children are diagnosed with chronic liver disease (CLD), with a fifth requiring liver transplantation at some stage. Some evidence suggests that these children may have lower cognitive ability than their healthy peers, which may affect the self-management skills required for independent management of liver disease in adulthood. Earlier detection of behavioural and developmental concerns, followed by timely referral to experienced specialist services, could improve health related quality of life, educational attainment and future employment outcomes. There is a current lack of evidence on developmental outcomes for children with CLD, how these interact with health outcomes, and when is the optimal time to intervene.


This study will establish a national data resource for children with CLD using linked health and education records, to evaluate healthcare and educational outcomes (including need for learning support), and their interaction. It will generate evidence to inform future development of guidance on long-term developmental follow-up.

Research questions:

RQ1 How do developmental outcomes, including school attainment and special educational needs (SEN) support, of children with different liver disease diagnoses compare to each other, and to those of the general population?

RQ2 To what extent does school absence due to medical care explain the association between CLD and developmental outcomes in children with liver disease?

RQ3 How do developmental outcomes of children following liver transplantation compare to those who have not undergone liver transplantation?

RQ4 What is the effect of age at liver transplantation on school age health and educational outcomes?


We will use the ECHILD Research Database which links hospital and school records for all children born in England since 1984. We will create phenotypes for CLD based on diagnosis and procedure codes in and use NHS Blood transfusion and Transplantation (NHSBT) data to identify a cohort of children up to age 18 with CLD (and specific diagnoses) and/or transplantation. Outcomes will include hospital admissions, school attainment, SEN and absences.

Analysis methods: We will use statistical models to evaluate outcomes, adjusting for relevant confounders (e.g. ethnicity, deprivation, birth characteristics) and clustering of outcomes within schools. We will use propensity scores to create a matched comparison group for children with and without liver transplantation, based on demographic and clinical indicators prior to transplantation. We will extend these models to evaluate whether age at transplantation is associated with outcomes accounting for competing risks (e.g. death).


Months 1-6: Systematic review of cognitive outcomes for children with CLD

Months 7-12: Creation of analysis cohort; data-cleaning; identification of cases; PPIE.

Months 13-18: Analysis and write-up for RQ1-RQ2.

Months 19-24: Analysis and write-up for RQ3. 

Months 25-36: Analysis and write-up for RQ4; dissemination; PPIE.  


Dr Jane Hartley, consultant paediatric hepatologist at Birmingham Children’s Hospital.

Plans for patient and public involvement and engagement for the project/student:

The student will support ongoing PPIE activity for ECHILD and will work with a group of parents and children and young people to understand their research priorities and their views on the use of routinely collected data for research purposes. PPIE will be ongoing throughout the PhD.

Biological Sciences (4)

 About the Project