UCL Great Ormond Street Institute of Child Health


Great Ormond Street Institute of Child Health


Evaluation of educational and healthcare outcomes and their interaction

Supervisors: Dr Katie Harron, Dr Marianne Samyn

Evaluation of educational and healthcare outcomes and their interaction for children with chronic liver disease in the UK

Review of the Key Literature:
Each year, 400 children are referred for specialist management of chronic liver disease (CLD) in the UK, coordinated by three paediatric liver centres who carry out over 70 liver transplantations per year (NHSBT, 2019; Williams, 2019). Following improvement in medical care over recent decades, and excellent outcomes following liver transplantation currently, children with CLD now live into adulthood and hence present a growing health problem with risk of significant disruption to typical development (Dhawan et al., 2017).

Children with liver disease are prone to neurodevelopmental difficulties including cognition, behaviour and motor development. Current data suggest that both in children surviving with their native livers and after liver transplantation, low-average intelligence and significantly abnormal scores on subscales of cognitive and behavioural measures are common (Rodijk, 2018). However, evidence to date is based on small, single centre studies predominantly after liver transplantation.

Long-term management and follow-up of children with CLD is well established, since it is recognised that many childhood liver diseases are precursors of adult CLD and cirrhosis. However, this follow-up does not currently include measures of behaviour, development or mental health. Early detection of behavioural, developmental and mental health problems in children with CLD, and timely referral to specialist services, could improve education, employment and health outcomes in the long-term. However, we do not currently have high-quality, national evidence on educational outcomes and learning needs of children with liver disease in the UK, or on the impact of diagnosis and severity of liver disease on these outcomes.

Hypothesis and/or Aims:
This study will help establish a national data resource for children with CLD using linked health and education records, which can be used to evaluate healthcare and educational outcomes (including need for learning support), and their interaction. It will generate evidence to inform health services of the educational needs of children with liver disease, and to inform future development of guidance on long-term developmental follow-up.

Research questions:
RQ1: How do educational outcomes, including special educational needs (SEN) support, of children with liver disease compare to those of the general population?
RQ2: What is the prevalence of school absences in children with liver disease, and to what extent does this explain the association between CLD and educational outcomes?
RQ3: How do educational 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 educational outcomes?

6-12 month plan (eg experimental approaches, data collection, preliminary analyses):
We will use existing linkage between health and education records (the ECHILD database) for a national cohort of children born in England between September 1995 and August 2020. We will model education outcomes using statistical methods, including propensity scores to create a matched comparison group for children with CLD with and without liver transplantation, based on demographic and clinical indicators prior to transplantation. This will allow us to evaluate the difference between two groups of children with similar characteristics (e.g. age, disease type, time since diagnosis, biomarkers), some of whom will have had transplantation.

Ethics Approval:
Ethical approval will be sought prior to study start.