Evaluating the long-term impacts of having tuberculosis in childhood and adolescence in Northeast London and nationally.

Tuberculosis is the world’s leading cause of death from a single infectious agent. In England, the number of people diagnosed with tuberculosis each year is rising and it might lose its “low” tuberculosis country status internationally soon. This project is embedded in Northeast London, which includes Newham, where TB levels are four times the average for England. 

Clinicians and researchers have been focussing on long-term health outcomes after TB treatment has finished, including locally with a new adult post-tuberculosis clinic through the Barts Charity-funded Queen Mary & Barts Health TB Centre. 

Although children and young people (CYP) are a priority population group in the National TB Action Plan, data on the long-term outcomes of CYP with tuberculosis in settings like the UK are limited, and hence the evidence base for what support is needed for them to achieve their potential. A combination of data from large numbers of CYP with TB, and in-depth conversations with CYP about their lived experience is needed to fill this gap. 

RESEARCH QUESTION: What are the long-term health and educational impacts of having tuberculosis in childhood and adolescence?

AIM 1: Synthesise current knowledge on long-term impacts of having had tuberculosis in childhood and adolescence. 

AIM 2: Apply the linked education, health, and mental health datasets within the national ECHILD database to test whether long-term outcomes are affected by having had tuberculosis 

AIM 3: Explore the lived experience after treatment completion of CYP in NEL who have had tuberculosis. 

AIM 4: Co-produce with CYP in NEL who have had tuberculosis and other stakeholders a priority setting and intervention design report

OBJECTIVES AND TRAINING:
Year 1: 
Design and register protocol for systematic review and meta-analysis  
Complete Safe Researcher training and gain Office of National Statistics Accredited Researcher status
Complete ECHILD-specific training course and data access application 
QMEthics research application for Aims 3 and 4.
Cohort analysis statistical training. 
Introduction to mental health, education and hospital episode statistics data in CYP. 

Years 2-3: 
Conduct and submit evidence synthesis for publication 
Develop TB cohort, prepare longitudinal data, define covariates and phenotype and analyse ECHILD linked datasets 
Qualitative research training in semi-structured interview techniques and thematic analysis. 
Participatory research and co-design training.
Conduct semi-structured interviews with CYP in NEL who have had TB

Year 3-4:
Transcribe and analyse qualitative data. 
Stakeholder and lived experience priority setting and intervention co-design workshop
Results dissemination and policymaker engagement.