RITM0158729 - HOPE-TBS: Health outcomes and post-treatment experiences of tuberculosis survivors
Source: gov.uk (2025-11-25)

The aim of this project is to investigate the health of tuberculosis (TB) survivors in the UK.

About the project:

What the project aims to do

The aim of this project is to investigate the health of tuberculosis (TB) survivors in the UK.

Through database analysis, University of Leicester will answer the following questions:
- What are the rates of death, illness and healthcare use among TB survivors in the UK?
- What factors are associated with death, illness and healthcare use among TB survivors?
Why this project is important

TB is a leading cause of long-term health problems

We know from research in other countries that about one-half of all the problems relating to the infectious disease TB occur in survivors and include ill-health, disability or early death. Research shows that death rates are 3 times higher in TB survivors compared to the rest of the population. TB causes damage to organs which can affect long-term physical health. For example, up to half of TB survivors who had lung TB may develop long-term lung damage. Mental health and financial and social wellbeing can also be affected.

Research is needed to understand the health of TB survivors in the UK

Although often thought to be a disease of the Victorian period, TB is a current and active health problem in the UK. Since 2000, over 100,000 people have been treated for TB in the UK. However, we know little about this population and few studies have been done looking at the health and wellbeing of TB survivors in the UK.

People in the UK who have TB experience healthcare inequalities – in general they often have poorer health and healthcare compared to the rest of society. This means that they are already at more risk of having health problems after TB.

It is urgent that high-quality research is done to help understand UK TB survivors’ health problems and improve their care. This study aims to describe the health and wellbeing of adult TB survivors in the UK using national data.

Who the data is about

This data is about people, aged over 16, diagnosed with TB who survived the illness and completed treatment between January 2000 and December 2024 (defined as TB survivors).

How the data will be used

UKHSA will produce a study-specific dataset for the University of Leicester comprising of data from:
- National Tuberculosis Surveillance system
- Hospital Episode Statistics
- ONS mortality data
University of Leicester will access the data securely through UKHSA’s Enterprise Data and Analytics Platform (EDAP) and analyse the data to describe health outcomes among TB survivors.

They will analyse the data to find out:
- how many TB survivors have died in the months and years after they completed TB treatment, and the risk factors for mortality among TB survivors
- how many TB survivors develop other health conditions, and the risk factors for developing these conditions.
- how frequently TB survivors use healthcare services, (for example, hospital admissions, A&E or outpatient attendances) , and which factors may be associated with higher use.
The team will calculate incidence rates for death, illness and healthcare use, and use Kaplan-Meier survival curves to assess whether various characteristics are associated with higher risk of an outcome (for example, death) among TB survivors. They will consider a range of risk factors, including age, sex, ethnicity, smoking status, migrant status, deprivation or other social challenges, pre-existing health conditions and the type of TB the person had (for example, whether drug resistant). For example, one graph may compare survival between UK-born and non-UK-born TB survivors.

They will also compare the mortality rate for TB survivors to the rate for the general population by estimating standardised mortality ratios (SMRs) (using publicly available age- and sex- specific standard population rates)

Finally, statistical modelling will be used to understand the effect of the different risk factors on the outcomes studied, among TB survivors (mortality, development of new health conditions, and healthcare use).

Anonymous data that complies with ISB1523: Anonymisation Standard for Publishing Health and Social Care Data (https://digital.nhs.uk/data-and-information/information-standards/governance/latest-activity/standards-and-collections/isb1523-anonymisation-standard-for-publishing-health-and-social-care-data/) will transferred to and held in archive at University of Leicester.

How often data is needed

Weekly

How this project will benefit public health and the public

The project will produce a detailed description of important health outcomes among TB survivors in the UK, as one part of a larger mixed methods study, which also includes a national survey of post-TB care and a interviews with TB survivors.

It aims to identify whether an unmet health need exists among TB survivors in order to inform care strategies.

The University of Leicester expect their findings to be important and relevant to future strategies relating to preventing illness and improving care for TB survivors.

Their findings will directly inform organisations including; the UK Health Security Agency (UKHSA) TB Unit, professional bodies such as the British Thoracic Society (BTS) and policy makers in the NHS.

Results will be shared with the public and published in high-impact journals and presented at academic conferences.

Planned project outputs and communication

The planned project outputs are:
- peer reviewed scientific journals
- internal report (publication not intended)
- conference presentation
- website
- submission to regulatory authority
- press release
Lawful processing of personal and special category personal data

The data needed for this project is not personal data.

Legal basis for using personal data (Article 6):

Not applicable.

Legal basis for using special category personal data (Article 9):

Not applicable.

Common law duty of confidentiality

The data needed for this project is not confidential patient information.

How is the duty of confidentiality set aside:

Not applicable.

National Data Opt-Out

Will opt-out preferences be applied?

No

Where “No”, why:

The National Data Opt-Out does not apply to anonymised data.

Digital Object Identifier:

Organisation’s Research Organisation Registry (ROR) ID:

ROR ID (https://ror.org/04h699437)