Deaths involving tuberculosis reported by coroners in England and Wales: a case series of coroners’ reports
Creators: name: Richards, Georgia C.
name: Helene-Mari Van Der Westhuizen
name: Milne, Ava
Publisher: name: OSF Registries
Year: 2024
Subjects: subject: Medicine and Health Sciences
subject: TB
subject: coroners reports
subject: preventable deaths
subject: preventable deaths tracker
subject: tuberuclosis

description: Background 

Tuberculosis (TB) is a preventable and treatable airborne disease caused by the mycobacteria Mycobacterium Tuberculosis, which has nonetheless remained one of the leading infectious disease causes of death globally (1,2). It most commonly affects the lungs (pulmonary TB) but can affect other areas of the body including the gastrointestinal system, bones, and central nervous system (3). In 1993, the World Health Organisation (WHO) declared a global emergency as cases of TB reached 8 million new cases a year, and 3 million deaths (4). The most recent WHO report estimated that in 2022, 10.6 million people fell ill with TB, and this resulted in an estimated 1.3 million deaths from TB (5). Whilst the number of deaths due to TB has declined since 1993, it is still one of the leading causes of death by a single infectious agent (5). The number of people affect by TB is largest in the WHO regions of Southeast Asia, Africa and the Western Pacific, with Europe seeing only a 2% share of global TB burden (5). The fatality rate of tuberculosis is also very varied in different countries. In all but three countries in Europe, the mortality rate of TB is below 20%; in Africa, tuberculosis has a mortality rate between 20% and 40% in nearly half of all countries (5). The exact cause of death due to TB is variable but can include septic shock, respiratory failure, haemoptysis and TB-related cachexia (6, 7). 

 

The United Kingdom (UK) is categorised as a low-incidence country, with only 7.5 cases of TB per 100,000 in 2022 (5). Whilst the number of TB people affected by TB has generally been declining in the UK since records began in 1913, there have still been fluctuations in notifications year on year and significant regional variation (8). For example, London has a six times higher TB notification rate than the South West, with the district with the highest TB notification rate being Newham (41.3 cases per 100,000) (9). The rate of decline has also been slowing and is not on track for the WHO EndTB target of 2035 (10). In 2022, there were 4450 individuals notified with TB in England and Wales (11, 3). The fatality rate of TB in the UK is an estimated 7%, similar to many countries in Europe, but still higher than 12 countries in the WHO European region (5). Due both to a decrease in new TB cases and the fatality rate, the mortality rate of TB per 100,000 population has decreased from 0.6 in 2010 to 0.3 in 2022 (12). However, in 2022, there were still an estimated 261 deaths due to TB in the UK (10). To reduce TB deaths by 95% by 2035, in line with the WHO End TB plan, this must reach no more than 15 deaths per year in 2035 (9). In an analysis of trends in TB deaths from 2001-2014 in the UK, TB was found to have caused or contributed to 35% of all deaths in those with tuberculosis (13). 

 

To prevent TB in the UK, NICE guidelines recommend the Bacille Calmette-Guérin (BCG) vaccine to neonates and infants with parents or with grandparents from a high-TB country, neonates and infants who live in an area of the UK with a TB incidence of 40 cases per 100 000. For adults who have not had the BCG vaccination at birth, it is also recommended for those at high risk due to their occupations, including healthcare workers or laboratory staff who have direct contact with patients with TB, new entrants to the country from high-incidence areas, or others whose occupations put them at risk, such as prison staff and staff at hostels frequented by homeless people (14). The overall effectiveness of the BCG vaccine was estimated at 18%, with the highest protection offered to children under the age of 5 years (15). This highlights the need for novel vaccines, especially that offers protection during adulthood. There are also screening programmes in place for new entrants to the UK from high-incidence areas and for new NHS employees. The screening predominantly uses chest X-rays. Diagnosis of TB involves culturing sputum samples to check for bacteria and imaging of suspected areas of TB (e.g. chest X-ray for suspected pulmonary and laryngeal TB). Rapid diagnostic nucleic acid amplification test is sometimes used if the patient is a child, an adult with HIV, or if multi-drug resistant TB is a possibility. Treatment of TB differs slightly depending on whether TB is latent (producing no clinical symptoms, with a low bacterial load and transmissibility) or active (clinical symptoms of TB due to a high bacterial load, and transmissible). Latent TB is treated with three months of isoniazid and rifampicin, followed by six months of treatment with isoniazid only. Active TB (without CNS involvement) is treated with a four drug regime (rifampicin, isoniazid, pyrazinamide and ethambutol) for two months, and then isoniazid and rifampicin for four more months. 

 

A retrospective cohort study of UK surveillance data from 2001-2014 used data from the Public Health England Enhanced Tuberculosis Surveillance System (for England, Wales and Northern Ireland) and the Enhanced Surveillance of Mycobacterial Infections system (for Scotland) to create a dataset for TB cases in the UK and matched this data to laboratory data on Mycobacterium tuberculosis complex isolates. They also used information from 12, 24 and 36-month follow-ups of treatments to analyse trends in deaths of TB cases. They found that 21% of those with TB were diagnosed post-mortem, and 49% of those who died (and for whom information was available) died within two months of starting treatment (13). This suggests that missed or late diagnosis of TB may contribute to death caused by tuberculosis. There have been many case series of coroner reports or autopsy reports on TB in countries around the world, but these tend to be from low-income and/or high TB burden countries. (13-19). There have also been similar case series in high-income, low TB burden countries- for example, in the EU (20) and North America (21). In almost all these studies, there were a significant proportion of people with TB that were diagnosed as having TB posthumously. In England and Wales, there have been case study descriptions of coroner reports published on TB, but none within this century (22, 23). One focused on cases of sudden, unexpected deaths due to tuberculosis, and found that this was more common in elderly Asian immigrant populations, in those homeless or with alcohol dependency, or both. The other investigated cases of tuberculosis undiagnosed until autopsy, and the reasons for this, which included missed diagnoses by general practitioners, and other medical professionals. An in-depth investigation into the preventable causes of death from tuberculosis, including whether these missed/late diagnoses contribute to death from tuberculosis and why they were missed, is therefore required. 

 

Coroners in England and Wales have a duty to write Prevention of Future Deaths reports ​(hereafter known as PFDs) and send these reports to recipients who must respond within 56 days to report on the action taken to prevent similar fatalities (24, 25). Previous research has analysed PFDs to identify concerns raised by coroners from a range of public health and patient safety concerns, including deaths involving medicines and preventable deaths during the COVID-19 pandemic (26-28)​. However, deaths involving tuberculosis have not yet been explored. Therefore, this study aims to explore the number of coroner reports in England and Wales that involved tuberculosis by using the preventable deaths tracker (29), from inception (July 2013) to May 2024, to understand the concerns raised by coroners regarding death from tuberculosis. 

 

 

Objectives 

We aim to systematically analyse the concerns raised by coroners in PFDs that mention tuberculosis as a cause of death, and the responses to them, to understand what actions have been taken and lessons learnt to prevent future deaths due to tuberculosis. 

 

Our objectives are to: 

1. Determine the number of PFDs in which tuberculosis is mentioned as a cause or contributor to the death 

2. Explore the concerns raised by coroners and the actions recommended by them in tuberculosis-related PFDs 

3. Calculate the numbers and types of individuals and/or organisations to whom the PFDs were addressed, and whether a response was received within the 56-day requirement 

4. Investigate the actions taken or planned, or the reasons for inactions, described in response to the tuberculosis-related PFDs