Research and analysis

Tuberculosis treatment and outcomes, England, 2023

Published 5 December 2024

Applies to England

© Crown copyright 2024

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This publication is available at https://www.gov.uk/government/publications/tuberculosis-in-england-2024-report/tuberculosis-treatment-and-outcomes-england-2023

Main messages

In 2023:

  • time between symptom onset and treatment start remained static, consistent with 2022, with approximately a third of individuals with infectious tuberculosis (TB) experiencing a delay of more than 4 months before starting treatment and another third a delay of between 2 and 4 months
  • the proportion of people receiving enhanced case management, reflecting the complexity of health and social needs, was 42.8%, similar to 2022
  • observed therapy, which includes both directly observed therapy (DOT) and video observed therapy (VOT) and is a key contributor to supporting treatment completion in individuals with more complex needs, was offered to 16.1% of people and given in 58.7% of those, similar to 2022
  • treatment outcomes at 12 months for individuals diagnosed in 2022, who are expected to have completed treatment by the end of 2023, were consistent with previous years, with 82.8% recorded as completing treatment and 3.8% having died, the remainder being lost to follow up, no outcome recorded or treatment stopped
  • treatment completion was lower for individuals with social risk factors (76.1%), compared to those without (84.1%), diagnosed in 2022 consistent with previous years

Treatment delay in people notified with pulmonary TB

Treatment delay is defined as the period from the start of symptoms (as reported by the patient) and the start of TB treatment. Diagnostic delay is the period from the start of symptoms to diagnosis and is reported in the TB diagnosis and microbiology chapter. In 2023 the median period between diagnosis and starting treatment was one day (interquartile range 0 to 2 days). This has remained stable over recent years (see Supplementary Table 1 in the accompanying data set).

In this chapter we report overall treatment delay and risk factors for treatment delay.

Table 1 presents data on the proportion of people notified with pulmonary TB with delay from symptom onset to treatment start of between 2 to 4 months and more than 4 months from 2019 to 2023.

Treatment delays have not reduced in the last 5 years, with approximately a third of individuals with infectious TB still experiencing a delay of more than 4 months, and another third a delay of between 2 to 4 months in 2023.

Table 1. Number and proportion of people with treatment delay notified with pulmonary TB in 2019 to 2023, England, 2023

Year 0 to 2 months (number) 0 to 2 months (proportion) 2 to 4 months (number) 2 to 4 months (proportion) Over 4 months (number) Over 4 months (proportion) Total
2019 923 40.4 666 29.1 697 30.5 2,286
2020 758 38.8 571 29.2 626 32.0 1,955
2021 744 37.6 603 30.5 633 32.0 1,980
2022 734 37.8 618 31.8 592 30.5 1,944
2023 836 39.9 630 30.1 628 30.0 2,094

Notes:

  • delays of ‘2 to 4 months’ includes delays between 61 to 121 days, and ‘over 4 months’ includes delays from 122 to 730 days
  • excludes people diagnosed with TB at post-mortem (104), those with delays over 2 years (110), and those with missing data for either start of symptoms (1,142) or treatment start date (227)
  • the total includes the number of people with pulmonary TB for whom time between symptom onset to treatment start was known

Factors associated with treatment delay in pulmonary TB

Further data for the proportion of people notified with pulmonary TB experiencing treatment delay is presented in the accompanying dataset:

There is considerable variation by upper-tier local authority in treatment delay. Averaged over the period 2021 to 2023, and excluding those with fewer than 5 notifications, 20 out of 138 (14.5%) upper tier local authorities had more than 45% treatment delay (4 months or more) and 9 (6.5%) had less than 15% treatment delay (range 80.8% to 8.3%). Treatment delays were higher in the UK born population in 2023 (35.2% with delay over 4 months) than those born outside the UK (28.4%).

As shown in Figure 1 below, older people had approximately a 30% increased risk of treatment delay compared with people aged 15 to 44 years and those born in the UK had a 24% increased risk. Males had a 11% decreased risk of treatment delay compared with females.

Figure 1. Predictors of treatment delays of over 4 months in people notified with pulmonary TB by risk groups, England 2021 to 2023 (aggregated data, univariable analysis)

Note: reference groups for risk ratios (RRs) in the order presented in the above figure are: female, born outside of the UK, no social risk factors (SRFs) recorded, not treated for multidrug-resistant (MDR) or rifampicin resistant (RR) TB, non-severe (TB with no known or potential central nervous system involvement) and aged 15 to 44 years old.

Data for all potential predictors tested for an association with treatment delay of 4 months or more are shown in Supplementary Table 5 of the accompanying dataset.

Enhanced support including directly observed therapy and video observed therapy for people undergoing TB treatment 

Enhanced case management

The 2022 joint case management tool provides standardised recommendations for enhanced case management (ECM) in individuals receiving anti-TB treatment with clinical and/or social complexities. Where there are social risk factors (SRFs) or MDR or RR TB, the case may be deemed ECM level 3 and require DOT or VOT, following National Institute of Health and Care Excellence (NICE) guidelines.

The ECM levels are:

  • ECM level 1: people with clinical and/or social issues which impact on treatment, for example, children with TB, or those taking antiretrovirals
  • ECM level 2: people with complex clinical and/or social issues which impact on treatment, for example, complex side effects or single drug resistance, which may necessitate weekly visits
  • ECM level 3: people with very complex clinical and or social issues which impact on treatment, for example, SRFs or MDR or RR TB which necessitates DOT or VOT

Table 2 shows levels of ECM by year. In 2023, 2,076 people notified with TB (42.8%) were assessed as needing some level of ECM, similar to 2022.

Table 2. Enhanced case management (ECM) by year, England, 2019 to 2023

Year Total Any ECM (number) Any ECM (percent) Level 1 (number) Level 1 (percent) Level2 (number) Level 2 (percent) Level 3 (number) Level 3 (percent) Unknown level (number) Unknown level (percent)
2019 4,704 1,300 27.6 14 0.3 11 0.2 766 16.3 509 10.8
2020 4,124 1,186 28.8 69 1.7 68 1.6 647 15.7 402 9.7
2021 4,406 1,606 36.5 439 10.0 395 9.0 640 14.5 132 3.0
2022 4,375 1,944 44.4 685 15.7 535 12.2 710 16.2 14 0.3
2023 4,855 2,076 42.8 720 14.8 578 11.9 768 15.8 10 0.2

Proportions needing ECM are reported in the accompanying dataset:

As shown in Figure 2 below, people with social risk factors were more than twice as likely to be identified as needing ECM (any level). From 2021 to 2023, 83.6% of children aged 14 years or less were recorded as needing ECM.

Figure 2. Predictors of identified need of ECM, of any level, England, notified in 2021 to 2023 (aggregated data, univariable analysis)

Note: reference groups for RRs in the order presented in Figure 2 are: female, not born in the UK, no SRFs recorded, fewer than 2 SRF factors recorded, no history of, imprisonment in those with data recorded and aged 15 to 44 years old.

Data for all potential predictors tested for an association with an identified need for ECM is shown in Supplementary Table 8 of the accompanying dataset.

Directly observed and Video observed therapy

The National Tuberculosis Surveillance System (NTBS) records if people are thought to need ECM, but not if they received that care. In contrast, the recording of whether DOT (or more recently also VOT) includes if it was offered and if was received.

Data on DOT and VOT is presented in the following supplementary tables of the accompanying dataset:

In 2023 data for completeness regarding if DOT or VOT was offered or not was 95.1%, (4,612 of 4,885 individuals), similar to 2022 (95.5% data completeness). In all TB notifications, DOT or VOT was recorded as offered to 16.1% (784 out of 4,612), of whom 58.9% received it.

There was regional variation in the proportion of people who were offered DOT or VOT with the highest proportions in London (25.8%) and the West Midlands (20.8%), and lowest in the South West (5.0%). The proportions of those who received DOT or VOT if offered were highest in the North East (88.9%, 8 out of 9 individuals), and lowest in the West Midlands (45.9%, 50 out of 109 individuals) and London (55.4%, 299 out of 550).

TB treatment outcomes in the non-MDR or non-RR TB cohort (without central nervous system disease)

Treatment outcomes at 12 months and last recorded treatment outcome

Treatment outcomes are reported according to the year of notification. For people treated for non-MDR or non-RR TB, outcomes are reported for those notified up to and including 2022 as that is the latest year of notifications for whom treatment completion is expected within the 2023 data. For people treated for MDR or RR TB, outcomes are reported for those notified up to and including 2021. For further definitions of TB treatment cohorts please see the Methodology and definitions chapter.

Mutually exclusive treatment outcome categories are shown in Table 3 below for people treated for non-MDR or non-RR TB without (central nervous system) CNS disease notified in 2022, by 12 months since start of treatment:

  • 82.8% had completed treatment
  • 3.8% had died
  • 3.2% were lost to follow up
  • 3.3% were still on treatment
  • 2.2% had stopped treatment

Table 3. Treatment outcome at 12 months and last recorded outcome for people notified in 2022 treated for non-MDR or non-RR TB with expected treatment duration less than 12 months, England, 2023

TB treatment outcomes TB treatment outcome at 12 months (number) TB treatment outcome at 12 months (percentage) Last recorded TB treatment outcome (number) Last recorded TB treatment outcome (percentage)
Treatment completed 3,125 82.8 3,281 86.9
Died 142 3.8 144 3.8
Lost to follow up 119 3.2 126 3.3
Still on treatment 125 3.3 41 1.1
Stopped 81 2.2 87 2.3
Not evaluated 184 4.9 97 2.6
Total 3,776 100.0 3,776 100.0

Note: excludes those with post-mortem diagnosis, those with CNS TB and those with MDR or RR TB.

Overall treatment completion increased to 86.9% for last recorded treatment outcome. Twelve-month TB treatment outcomes for this cohort for notifications from 2013 to 2022 are shown in Supplementary Table 11 of the accompanying dataset.

Of those notified in 2022 and reported to still be on treatment at 12 months (125 people, Table 3), 83 (66.4%) subsequently completed treatment as their last recorded outcome. At the time of data close, 37 (29.6%) were still on treatment, 3 (2.4%) were lost to follow-up, and 2 (1.6%) people had their treatment stopped. Of those notified in 2022 and reported as not evaluated at 12 months (184), 72 (39.1%) were subsequently reported as treatment completed, 2 (1.1%) died, 5 (2.7%) were lost to follow-up, 4 (2.2%) were still on treatment, 4 (2.2%) had their treatment stopped and the rest remained as non-evaluated (97, 52.7%). Last recorded treatment outcomes for this cohort notified from 2013 to 2022 are shown in Supplementary Table 12 of the accompanying dataset.

For the above cohort notified in 2022, there was a small reduction in the 12-month TB treatment completion rate at 82.8% compared with previous years (range 84.7% to 87.2%). Treatment completion at the last recorded outcome was lower at 86.9% compared with range of 89.5% to 90.9%, but this is expected to increase after more months of follow up (see Supplementary Table 12 of the accompanying dataset).

Treatment completion in those with and without a social risk factor  

In 2023, 12-month TB treatment completion in people notified in 2022 treated for non-MDR or RR TB and expected to complete within 12 months with one or more SRFs was 76.1%, significantly lower than in those without a SRF (84.1%, p<0.001).

Treatment outcomes in those who did not complete treatment within 12 months 

Treatment outcomes at 12 months in those who did not complete within this period are shown in Figure 3 and in Supplementary Table 11 of the accompanying dataset. The proportion of those not evaluated for the 2022 cohort is expected to decrease slightly as more missing values are entered over time. The proportion of those who died within 12 months (measured from start of treatment, diagnosis or notification depending on which is the latest data point available) was 3.8%, lower than the previous high of 5.1% in those notified in 2020 (p=0.04) and similar to most other years. This year there were 2 further deaths reported in the last recorded outcome (see Table 3), but this did not result in any change in the proportion of people who had died at their last recorded outcome. The proportion of persons lost to follow-up increased from 2022 (3.2% in 2023 compared to 2.6% in 2022). The proportion recorded but not evaluated increased in 2022 to 4.9%, the highest recorded, and an increase from 3.3% seen in 2021. There was an increase in those recorded but not evaluated between 2020 (2.2%) and 2021 (3.3%) (p=0.02). However, as has occurred in previous years, the proportion recorded as not evaluated is expected to decrease in later reporting years with increased follow-up.

Figure 3. Breakdown of outcomes of people treated for non-MDR or non-RR TB, notified in 2013 to 2022 who did not complete treatment within 12 months and expected treatment duration less than 12 months, England, 2023

Data underlying this figure is available in Supplementary Table 11 of the accompanying dataset.

Treatment outcomes by 12 months by age, sex and region

Treatment outcomes by 12 months are reported for the cohort of people treated for non-MDR or non-RR TB and without severe disease in the accompanying dataset. They are reported by:

Treatment completion has consistently decreased with increasing age group. For people notified in 2022, treatment completion was 86.4% in children aged 14 years or under, compared with 73.0% in adults aged 65 years or over (p<0.001 for trend). When further disaggregated further by sex, males of all age groups had more loss to follow up.

Treatment duration

A treatment end date was recorded for 98.3% (3,206 out of 3,293) of people notified in 2022 who were expected to complete treatment within 12 months; of these 40.6% completed within the standard 6 months and a further 32.2% in 6 to 8 months, and 4.7% took more than 12  months to complete treatment. These proportions have changed little over the previous 10 years (see Supplementary Table 17 of the accompanying dataset).

TB treatment outcomes for the non-MDR or non-RR TB cohort with CNS disease

Last recorded treatment outcomes in this cohort for those notified in 2022 are shown in Table 4 and for notification years from 2013 to 2022 in Supplementary Table 18 of the accompanying data set. At the last recorded outcome, 77.8% of people notified in 2022 had completed treatment, while 3.4% were still on treatment. Compared with the cohort without CNS disease, the proportion of people who had died as their last recorded treatment outcome was more than double at 9.8%.

Table 4. Last recorded treatment outcome for people notified in 2022 with non-MDR or non-RR TB with CNS disease, England, 2023

TB treatment outcomes Last recorded TB treatment outcome (number) Last recorded TB treatment outcome (percentage)
Treatment completed 364 77.8
Died 46 9.8
Lost to follow up 17 3.6
Still on treatment 16 3.4
Stopped 12 2.6
Not evaluated 13 2.8
Total 468 100.0

Note: excludes those with post-mortem diagnosis and those with MDR or RR TB.

Last recorded treatment outcome for the entire non-MDR or non-RR TB cohort

Last recorded treatment outcome for the entire non-MDR or non-RR TB cohort are shown in the accompanying dataset:

Treatment completion as the last recorded outcome for the entire non-MDR or non-RR TB cohort has not notably changed over time, with a peak of 90.2% in 2013 and a 10-year average of 89.0%. The proportion of people who had died at their last reported outcome was 4.5% for those notified in 2022, less than the previous high of 6.0% for people notified in the peak pandemic year of 2020 and slightly less than the 10-year average.

For people notified in 2022, the proportion of people who had died was greater in those who were notified with pulmonary disease, both with other sites of disease as well (1,957 completed treatment; 5.8% died) or with only pulmonary disease (1,395 completed treatment; 5.1% died), compared with people notified with extrapulmonary disease only (1,687 completed treatment; 2.9% died).

People notified with miliary TB and TB meningitis had the highest proportions of deaths (92 completed treatment, 13.5% died; 66 completed treatment, 19.4% died) compared with extra-thoracic lymph node TB (818 completed treatment, 1.5% died).

Variations in treatment outcomes between UKHSA regions were generally small.

Factors affecting treatment completion at last recorded outcome in the entire non-MDR or non-RR cohort

Figure 4 presents factors associated with treatment completion at the last recorded treatment outcome for the entire non-MDR or RR cohort for people notified in 2020 to 2022 combined. In univariable analysis males, those with pulmonary disease, those born in the UK or with social risk factors, those with prison history, previous TB or CNS disease were less likely to complete treatment. The group least likely to complete treatment were older people aged 65 years or more compared with people aged 15 to 44 years, whilst children and those with treatment delay compared to those without treatment delay were more likely to complete treatment.

Figure 4. Predictors of treatment completion (last recorded outcome) for people treated for non-MDR or non-RR TB, England, notified in 2020 to 2022 (aggregated data, univariable analysis)

Notes:

  • comparison groups for RRs are as follows:
    • males
    • pulmonary TB with or without extra-pulmonary TB compared with non-pulmonary TB only
    • no SRFs recorded
    • no history of imprisonment in those with data recorded
    • no previous diagnosis in those with data recorded
    • CNS disease includes those with TB meningitis, spinal, miliary or cryptic TB in which CNS involvement cannot be excluded compared to all other sites of disease
    • people aged 15 to 44 years, less than 2 months’ treatment delay in those with treatment start date recorded
  • people treated for MDR TB or RR TB and post-mortem diagnosis are excluded

Data underlying this analysis is presented in Supplementary Table 22 of the accompanying data set.

All deaths for the entire non-MDR or non-RR TB cohort

For people notified in 2022, in the non-MDR or non-RR TB cohort there were an additional 33 deaths in people who were diagnosed with TB post-mortem and are not included in the treatment outcome figures above. When these people are included, the proportion of all people notified with TB that died increased to 5.2% out of 4,277 people.

Out of 190 deaths of people in this cohort notified in 2022, TB was reported to have caused or contributed to death for 45.8%, was incidental to death for 26.7%, was unknown in 21.1% and missing in the remaining 9.5%. These proportions have not notably changed over time (Supplementary Table 23 of the accompanying data set). For the 33 deaths that were in people diagnosed post-mortem, it was unknown or missing for all if TB was the cause of death.

Time to death in the entire non-MDR or non-RR TB cohort

Out of 190 people who died who were not diagnosed postmortem, 171 (90.0%) had a known treatment start date, of whom, 98 (56.6%) were reported to have died within 60 days of starting treatment.

Factors affecting risk of death at last recorded outcome in the entire non-MDR or non-RR cohort

Figure 5 shows factors associated with death as the last reported TB treatment outcome adjusted for the effect of age for people notified in 2020 to 2022. Independent of age, males, and people with pulmonary disease, those with SRFs and comorbidities had an increased risk of dying. The largest effects were for the relatively rare conditions of current alcohol misuse (affecting 4.7% of the analytical cohort; adjusted RR 3.42, 95% CI: 2.73 to 4.30) and those with comorbid chronic liver disease (affecting 1.5% of the analytical cohort; adjusted RR 3.1, 95% CI: 2.38 to 4.03). Pulmonary TB, affecting 52.9% of the notified individuals, was associated with a more than double risk of death (adjusted RR 3.00; 95% CI: 2.31 to 3.91) and of similar magnitude to risk associated with having severe CNS TB disease.

Figure 5. Factors associated death for entire non-MDR or RR cohort, England, 2020 to 2022 (aggregated data)

Notes:

  • comparison groups for RRs in the order presented as follows:
    • males; pulmonary TB with or without extra-pulmonary TB compared with non-pulmonary TB only
    • born outside of the UK
    • no SRFs recorded, prison drug, alcohol, homelessness or mental health needs identified in those with data recorded
    • no history of smoking in those with data recorded
    • no previous TB diagnosis
    • CNS disease includes those with meningitis, spinal, miliary or cryptic TB in which CNS involvement cannot be excluded compared to all other sites of disease
    • no diabetes, hepatitis, chronic liver or chronic renal disease or immunosuppression in those with data recorded
  • people treated for MDR and RR TB and TB diagnosed at post-mortem are excluded

Data underlying this analysis, including factors not shown here are presented in Supplementary Table 24 of the accompanying dataset.

TB treatment outcomes in the drug resistant (MDR or RR TB) cohort

TB outcomes for the MDR or RR cohort are reported at 24 months, so the most recent complete data is for people notified in 2021. The 2021 cohort comprised 68 people treated for MDR or RR TB. 62 of these were culture confirmed MDR or RR TB at diagnosis, of whom 13 had pre-extensively drug resistant (pre-XDR) TB and 4 had XDR TB (see Table 13 in the TB diagnosis and microbiology, England, 2022: supplementary data set).

Treatment outcome at 24 months and last recorded outcome for persons treated for drug-resistant TB notified in 2021 are shown in Table 5 and for notification years 2013 to 2021 in Figure 6 and Supplementary tables 25 and 26 in the accompanying dataset. A total of 51 people notified in 2021 completed treatment within 24 months. A further 4 people completed treatment after 24 months, bringing overall treatment completion for people notified in 2021 to 80.9%. Although overall treatment completion for people with MDR or RR TB has remained similar from 2013 to 2021, there has been an increase in treatment completion within 24 months, from 72.6% in 2012, to 80.9% in 2021, reflecting improved drug regimens (Supplementary Table 26 in the accompanying dataset).

Table 5. Treatment outcome at 24 months and last recorded outcome for people treated for MDR or RR TB notified in 2021, England, 2023

TB treatment outcome TB treatment outcome at 24 months (number) TB treatment outcome at 24 months (percentage) Last recorded TB treatment outcome (number) Last recorded TB treatment outcome (percentage)
Treatment completed 51 75 55 80.9
Died 1 1.5 1 1.5
Lost to follow-up 2 2.9 2 2.9
Still on treatment 5 7.4 5 7.4
Stopped 1 1.5 1 1.5
Not evaluated 8 11.8 4 5.9
Total 68 100 68 100

Note: table excludes people diagnosed post-mortem.

Figure 6. Proportion of people treated for MDR or RR TB with treatment completion at 24 months or last recorded outcome notified in 2012 to 2021, England 2023

Data underlying this figure is shown in Supplementary Tables 25 and 26 in the accompanying dataset.

Treatment outcomes at 24 months for people with MDR or RR TB notified from 2012 to 2021 and who did not complete treatment are shown in Figure 7 below and in Supplementary Table 25 of the accompanying dataset.

Figure 7. Breakdown of outcomes of people treated for MDR or RR TB, notified in 2012 to 2021 who did not complete treatment within 24 months, England, 2023

Data underlying this figure are available in Supplementary Table 25 in the accompanying dataset.

For people notified in 2021 who completed treatment, time to completion was known for 53 out of 55 (96.4%) (Supplementary Table 27 of the accompanying dataset).

Deaths in the MDR or RR TB cohort

In 2022, there were no postmortem diagnoses and there was only 1 death in this cohort for people notified in 2021.

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