Understanding the impact of potential inequalities in care on early life outcomes for children with Spina Bifida

A2002438

Kate Parmenter, a Leeds Children's Hospitals Clinical Research Fellow, is leading a national project to understand potential inequalities in care and outcomes for children with Spina Bifida and their families across the UK. It aims to examine the impact of health inequality and deprivation on early life outcomes for children with Spina Bifida.

Spina Bifida arises from a defect in the development of the primitive spinal cord and brain within the first twelve weeks of pregnancy. It often leads to complex, lifelong multisystem comorbidities requiring intensive follow-up and multiple medical and surgical interventions. Common sequelae include abnormal sensation, paralysis, incontinence, learning difficulties, and infections of the brain and spinal cord.

Over three years, the team will access data for all children born with Spina Bifida in the UK from 1 January 2018 to 31 December 2023. This data will be linked to the National Congenital Anomaly and Rare Disease Registration Service to produce a timeline from conception to birth and define early life progress. The study will benchmark the current national situation of care structure and provision, assess regional trends in accessing antenatal care and termination discussions, and identify risks for severe adverse life outcomes, such as mortality or PICU admissions within the first two years of life.

The risk of severe adverse health outcomes for children born with Spina Bifida in the context of social and health inequality is under-researched. Socioeconomic inequalities impact health outcomes, and the COVID-19 pandemic has exacerbated these pre-existing inequalities. A previous pilot retrospective cohort study in the West Yorkshire and Humber region revealed stark inequalities, with the poorest outcomes observed in the most deprived quintiles of the Index of Multiple Deprivation (IMD).

This project aims to understand and improve healthcare outcomes for this vulnerable cohort. By interrogating national-level data, the study will provide a benchmark to address disparities in service provision and inform NHS planning over the next five years.

Lead Researcher	Dr. Kate Parmenter Leeds Children’s Research Fellow/Speciality Paediatric registrar
Host Organisation/CSU	Leeds Children’s Hospital Leeds Children’s Hospital Leeds Teaching Hospitals NHS Trust
Grant Amount	£1003
Start Date	05/03/2023
Estimated Duration	12 months
Impact Areas	Rare diseases
Tags/key notes	Neurological