Health and education outcomes of children with Sickle Cell Disease in England

Sickle Cell Disease (SCD) is a serious, lifelong condition that causes anaemia, increased infection risk and pain.1 Around 300 affected babies are born annually in the UK. SCD mainly affects people with African or Caribbean heritage; children and young people living with SCD may have multiple short periods of school absence, or longer periods of illness and hospitalisation, as well as facing additional challenges, including racism and barriers to healthcare access.2,3 Despite good understanding of the pathophysiology of the disorder, information about health and education outcomes for children and young people with SCD is lacking. Research into SCD outcomes has been neglected compared to other genetic conditions with life-long impact, such as cystic fibrosis.2

This PhD aims to address this research gap and improve care, health and educational outcomes for children and young people living with sickle cell disorder through better understanding of the longitudinal impact of healthcare experiences in early life on later outcomes. The project will explore whether children and young people with SCD have more school absences and worse educational attainment compared to children unaffected by SCD, or with other chronic conditions. It will explore outcomes for specific subgroups with SCD, for example children who have experienced stroke, and investigate the relationship between length of hospital admissions, higher absence rates and educational attainment. This project will use a unique linked database, called ECHILD4, that connects national health, education and social care data for all children and young people in England (c.15 million individuals) to define a cohort of children with SCD and comparator cohorts. Key outcomes will be mortality, hospital admission rates, accident and emergency attendance rates, school absences and educational attainment. Clinicians from NHS Trusts will support professional development for the student, and the translational impact of the research. They will help define clinical coding lists, control populations and outcomes, and support translation of findings into clinical practice.

The PhD will be undertaken in partnership with the NHS Race and Health Observatory (RHO), an independent organisation established to address racial and ethnic inequity in health. The RHO is supported by NHS England and works in partnership with government and wider national stakeholders, including research organisations, regulators and funders, to ensure high quality research evidence is translated into health policy and practice. It provides a unique environment with rich opportunities to interact with specialists in race inequality, policy, and communications, where the student can learn how to build networks of influence and advocacy, and maximise opportunities to translate complex research evidence into real-world applications to transform health and care. The student will have a co-supervisor from the RHO who will provide supervision, support and training throughout the PhD. The student will also have two full-time internship placements at RHO in the first and final year of the PhD (3 and 6 months respectively) during which they will contribute to the work of the RHO and be involved in sickle-cell related initiatives (for example, developing commissioning briefs and policy recommendations). The student will also be supported to develop patient and public involvement and engagement (PPIE) for their PhD project, through working with the Sickle Cell Society, National Haemoglobinopathy Panel and UK Forum on Haemoglobin Disorders, and involving children, adults and families with lived experience of SCD in their work.  

Overall the project will provide high quality research training that brings together life course epidemiology and data science, providing skills in relation to the design, conduct, analysis and interpretation of large health and educational datasets, as well as transferable research skills such as literature searching, critical analysis, scientific writing and communication, and project management.

References:

1. Dormandy E, et al. J Public Health 2017;40(3):e291-e95.

2. Lee L, et al. Public Health Rep 2019;134(6):599-607.

3. Sickle Cell Society. (2019) https://www.sicklecellsociety.org/wp-content/uploads/2019/11/SCD-in-Childhood_Final-version-1.pdf 

4. McGrath-Lone L, et al. Int J Epidemiol 2022;51(1):17-17f.