Understanding childhood acquired brain injury healthcare pathways using linked data

What we are doing?

We are conducting the first population-based study in the United Kingdom to understand the burden of acquired brain injury (ABI) in children and young people (CYP). Using national healthcare data linked across primary and secondary care, we aim to develop the means to identify different types and severities of ABI. We intend to assess healthcare utilization, estimate rehabilitation needs, and understand the clinical characteristics of ABI in CYP. By doing so we hope to create a comprehensive picture of healthcare pathways to improve the understanding of the long-term health impact of ABI on CYP and their families. 

Why we are doing it?

The current evidence on childhood ABI is limited with no national registry existing; thus, there is no certainty surrounding how many children are living with ABI-related disability. Furthermore, it can be difficult to monitor their long-term health. Thus, this study aims to develop a stronger understanding of the burden of childhood ABI in terms of severity and type, as well as assess healthcare utilization amongst the effected individuals in the long-term to inform the development of effective healthcare pathways for rehabilitation. 

What the benefits will be and to whom?

This study will benefit children and young people (CYP) with acquired brain injury (ABI) by understanding healthcare pathways for those affected. This will benefit families of those affected by better informing rehabilitation and support pathways. Healthcare providers will be able to use the findings to inform clearer guidelines on diagnosing, managing and monitoring childhood ABI, consequentially helping to reduce long-term health and social care needs. Policymakers and researchers will also gain valuable knowledge into the prevalence and healthcare needs of these individuals, which can inform healthcare policies and resource allocation.

Who we are working with?

We are working with a multidisciplinary team of clinical and academic experts, including occupational therapists, pediatricians, A&E consultants, nurse specialists, physiotherapists, and epidemiologists. This study will be completed in close collaboration with the NHS, as well as utilizing data from the Clinical Practice Research Datalink (CPRD) to conduct the research. Input will also come from childhood ABI experts, families, and the affected individuals in order to guide this study, ensuring relevance to real-world experiences, clinical care and rehabilitation. 

Contact

Sophie Orchard, PhD Student, University of Nottingham, lpxso8@nottingham.ac.uk.