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Title:
Health and development outcomes for children with kidney disease: a population-based cohort using novel linkage between health and education records
Supervisors:
Katie Harron and Kate Lewis
Project Description:
Background
Chronic Kidney Disease (CKD) in childhood has considerable impacts on physical health with impaired growth1, development2 and psychosocial health3,4. Despite these significant health consequences, little is known about the educational attainment of children with CKD, in particular those requiring kidney replacement therapy. Children with CKD may have low-average cognition compared with the general population5; limited evidence suggests that children on dialysis may be at higher risk compared with children with mild to moderate stage CKD and transplant recipients5. Earlier detection of behavioural and developmental concerns, followed by timely referral to experienced specialist services, could improve educational attainment and health related quality of life. There is a current lack of evidence on developmental outcomes for children with kidney disease, and when is the optimal time to intervene.
Aim
This study will establish a national data resource for children with kidney disease 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.
Objectives:
1. To describe how developmental outcomes, including school attainment and special educational needs (SEN) provision, of children with CKD compared to those of the general population
2. To quantify the extent to which school absence mediates the association between kidney disease and developmental outcomes
3. To determine whether developmental outcomes of children following kidney transplantation differ to those of children who have not undergone transplantation and whether differences are noted in those who receive an early or pre-emptive kidney transplant, compared to those who experience time on dialysis.
4. To explore the effect of age at kidney transplantation on school age health and educational outcomes.
Methods
We will use ECHILD, which links hospital and school records for all children born in England since 1984. We will create phenotypes for CKD based on diagnosis and procedure codes in HES and validate these where possible with clinical data, to identify a cohort of children up to age 16 with CKD. Outcomes will include hospitalisations, school attainment, SEN provision and absences.
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 explore the use of causal inference methods to determine the causal effect of CKD on outcomes. We will extend these models to evaluate whether age at transplantation is associated with outcomes, accounting for competing risks (e.g. death), and investigate whether it is possible to determine optimal timing of transplantation through a target trial emulation approach.
Timeline
Months 1-6: Systematic review of cognitive outcomes for children with CKD
Months 7-12: Creation of analysis cohort; data-cleaning; identification of cases; Patient and Public Involvement and Engagement (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.
References
1. Harambat et al. Adult height in patients with advanced CKD requiring renal replacement therapy during childhood. CJASN. 2014;9(1):92.
2. Haffner, Zivicnjak. Pubertal development in children with chronic kidney disease. Pediatric nephrology. 2017;32:949-964.
3. Hamilton et al. Psychosocial health and lifestyle behaviors in young adults receiving renal replacement therapy compared to the general population: findings from the SPEAK study. Am J Kidney Dis. 2019;73(2):194-205.
4. Chen et al. "Neurocognitive and educational outcomes in children and adolescents with CKD: a systematic review and meta-analysis." Clin J Am Soc Nephrol. 2018;13(3):
Contact Information:
Katie Harron