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Supervisors names
Rachel Knowles
Ania Zilbersztejn
Background:
SCD is a serious, life-long condition that can cause anaemia, increased infection risk, and pain.(1) Around 300 babies are born with SCD annually in the UK. SCD mainly affects people with African or Caribbean heritage. Children and Young People (CYP) living with SCD and their families may face additional challenges, including racism and barriers to healthcare access.(2) CYP with SCD may have multiple short periods of school absence, or longer periods of illness leading to ‘persistent absence’.(3) There is a dearth of data regarding health and education outcomes for children and young people (CYP) with SCD, particularly since research into outcomes for CYP with SCD has been neglected compared to CYP living with other genetic conditions, such as cystic fibrosis.(2) This PhD project will seek to address this research gap, by using a unique linked, administrative database, ECHILD(4), which connects national health, education and social care data for all CYP in England – around 15 million individuals.
Aims/Objectives:
The overall aim is to describe health and education outcomes for CYP with SCD. Specific objectives are to:
1) Define a cohort of CYP with SCD in ECHILD, and derive suitable, matched control cohorts of CYP with other chronic conditions, and CYP with no condition recorded
2) Describe variations in health outcomes for CYP with SCD within ECHILD, including mortality, hospital admission rates, accident and emergency attendance rates
3) Describe variations in education outcomes for CYP with SCD, including absences, SEN provision and attainment (key stage results).
Methods:
The student will use the ECHILD database, which links Hospital Episode Statistics (HES), the national hospital database for England, to the National Pupil Database (education records for the 93% of children in English state schools), and social care records. For objective 1, the student will use clinical coding in HES to characterise a cohort of CYP with SCD in ECHILD and validate the cohort using the National Haemoglobinopathy Register. They will develop control cohorts of children unaffected by SCD (but potentially affected by other long-term conditions); engaging with CYP, parents and clinicians to define these. For objectives 2&3, the student will fit generalised linear mixed models, or time-to-event analyses, utilising the longitudinal data in ECHILD to describe variations in health and education outcomes for children with SCD, compared to control children, by region, ethnic group, parental migration history, and socio-economic status.
Timeline:
Year 1: define and validate the SCD ECHILD cohort and prioritise outcomes ; Years 2 and 3: meet objectives 2 & 3 and present results to stakeholders; write up the thesis.
References:
1. Dormandy E, et al. How many people have sickle cell disease in the UK? J Public Health 2017;40(3):e291-e95.
2. Lee L, et al. Reducing Health Care Disparities in Sickle Cell Disease: A Review. Public Health Rep 2019;134(6):599-607.
3. Sickle Cell Society. Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care. 2019. https://www.sicklecellsociety.org/wp-content/uploads/2019/11/SCD-in-Chil...
4. Mc Grath-Lone L, et al. Data Resource Profile: The Education and Child Health Insights from Linked Data (ECHILD) Database. Int J Epidemiol 2022;51(1):17-17f.
Contact
Rachel Knowles: rachel.knowles@ucl.ac.uk