Research and analysis

TB treatment and outcomes, England, 2022

Updated 15 February 2024

Main messages

Time between symptom onset and treatment start has remained static in the last decade with approximately a third of individuals with infectious TB experiencing a delay of more than 4 months and another third a delay of between 2 and 4 months.

Individuals born in the UK have longer delays, with 37% having more than 4 months between symptom onset and treatment, compared with 28% in the non-UK born population. This difference is consistent with but larger in 2022 than in most previous years. Treatment delays of 4 months or more were similar in people with or without social risk factors.

An increasing proportion of individuals with TB are classified as needing enhanced case management (ECM), reflecting the complexity of health and social needs; in 2022 43.2% of individuals had ECM compared with 25.7% in 2018.

Directly observed therapy (DOT) is a cornerstone of supporting treatment completion in individuals with more complex needs. DOT was offered to 16.9% of individuals in 2022, consistent with the previous 3 years.

Treatment outcomes for individuals diagnosed in 2021, who are expected to have completed treatment by the end of 2022, are consistent with previous years, with 88.9% recorded as completing treatment and 4% having died, the remainder being lost to follow up, no outcome recorded or treatment stopped.

Treatment completion for individuals diagnosed in 2021 was lower in people with social risk factors at 75.7% compared with 85.7% in those without a social risk factor (SRF).

Treatment delay

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 2022 the median period between diagnosis and starting treatment was one day (interquartile range 0 to 3 days). This has remained stable over recent years (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 between 2 to 4 months and more than 4 months from 2012 to 2022.

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

Table 1. Number and proportion of people with treatment delay notified with pulmonary TB in 2018 to 2022, England, 2022

Year	0 to 2 months, n (%)	2 to 4 months, n (%)	Over 4 months, n (%)	Total
2018	957 (41.5%)	721 (31.3%)	626 (27.2%)	2,304
2019	920 (40.3%)	665 (29.1%)	698 (30.6%)	2,283
2020	755 (38.7%)	569 (29.2%)	625 (32.1%)	1,949
2021	736 (37.6%)	597 (30.5%)	624 (31.9%)	1,957
2022	725 (38%)	604 (31.7%)	577 (30.3%)	1,906

Notes
1. Delays of ‘2 to 4 months’ includes delays between 61 to 121 days, and ‘over 4 months’ includes delays from 122 to 730 days.
2. Excludes people diagnosed with TB at post-mortem (130), those with delays over 2 years (161), and those with missing data for either start of symptoms (1,296) or treatment start date (0).
3. 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

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

• by UKHSA region from 2012 to 2022 in Supplementary Table 2
• by upper-tier level local authority averaged from 2020 to 2022 in Supplementary Table 3
• by place of birth (UK or non-UK born) from 2012 to 2022 in Supplementary Table 4

There is considerable variation by upper-tier local authority in treatment delay. Averaged over the period 2020 to 2022, 22 out of 137 (16%) of upper tier local authorities had more than 45% treatment delay (4 months or more) and 10 (7.3%) had less than 15% treatment delay. Treatment delays were higher in the UK born population (37% with delay over 4 months) than the non-UK born (28%).

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 21% increased risk. Males had a 13% 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 2020 to 2022 (aggregated data Table 4 of TB Treatment in England data set)

Note: reference groups for RRs in the order presented in the above figure are: female, born outside of the UK, no SRFs recorded, not treated for MDR or 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 data set.

Enhanced support including directly observed therapy for people undergoing TB treatment 

Enhanced case management (ECM)

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 (SRF) or multidrug or rifampicin-resistant TB (MDR or RR TB), the case may be deemed ECM level 3 and mandate directly observed therapy, following National Institute of Health and Care Excellence (NICE) guidelines.

• 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, social risk factors (SRFs) or MDR or RR TB which necessitates DOT or video observed treatment (VOT)

Table 2 shows levels of ECM by year. In 2022, 1,893 people notified with TB (43.2%) were assessed as needing some level of ECM, an increase of 60% in number needing ECM since 2018, although this is mostly due to an increase in level 1 ECM.

Table 2. Enhanced case management (ECM) by year, England, 2018 to 2022

Year	Total	Any ECM	Level 1	Level 2	Level 3	Unknown level
2018	4610	1,183 (25.7%)	24 (0.5%)	9 (0.2%)	726 (15.7%)	424 (9.2%)
2019	4704	1,299 (27.6%)	13 (0.3%)	11 (0.2%)	766 (16.3%)	509 (10.8%)
2020	4122	1,181 (28.7%)	68 (1.6%)	65 (1.6%)	646 (15.7%)	402 (9.8%)
2021	4410	1,598 (36.2%)	435 (9.9%)	392 (8.9%)	636 (14.4%)	135 (3.1%)
2022	4380	1,893 (43.2%)	686 (15.7%)	504 (11.5%)	689 (15.7%)	14 (0.3%)

Proportions needing ECM are reported in the accompanying data set:

• by UKHSA region in 2022 in Supplementary Table 6
• by demographic characteristics in 2022 in Supplementary Table 7

Despite guidelines stating that all children should receive at least level 1 ECM, from 2020 to 2022 only 73.2% of children aged 14 years or less were recorded as needing ECM. This compared with similar proportions of people with a history of imprisonment (70.2%), alcohol or drug misuse (78.5% and 73.45 respectively) who were also approximately twice as likely to be recorded as needing ECM as groups without these characteristics as shown in Figure 2 below. People with a reported previous episode of TB and males were also more likely to be recorded as needing ECM.

Figure 2. Predictors of identified need of enhanced case management (ECM), of any level, England, notified in 2020 to 2022 (aggregated data, univariable analysis)

Note: reference groups for RRs in the order presented in Figure 2 are: female; no previous TB episode recorded in those with data recorded; no SRFs recorded; no history of imprisonment in those with data recorded; not treated for MDR or RR TB; 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 data set.

Directly observed therapy (DOT)

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 DOTs is presented in the accompanying data set:

• from 2012 to 2022 in Supplementary Table 9
• by demographic characteristics including age, sex, region of residence and presence of SRFs in 2022 in Supplementary Table 10

In comparison with previous years, in 2022 there was much improved data completeness regarding if DOT was offered or not (recorded in 95.5%, 4,185 of 4,380 individuals, compared with 64.2% in 2021). In all TB notifications, DOT was recorded as offered to 16.9% (740 out of 4,380), of whom 60.9% received it.

There was regional variation in the proportion of people who were offered DOT, with the highest proportions in London (26.4%), West Midlands (24.4%) and the South East (19.8%) and lowest in the North West (5.2%). The proportions of those who received DOT if offered it were highest in the South West (90%, 9 out of 10 individuals) and lowest in the West Midlands (48.3%, 57 out of 118 individuals) and London (57.1%, 233 out of 408).

TB treatment outcomes in the non-MDR or non-RR TB cohort (without central nervous system (CNS) 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 2021 as that is the latest year of notifications for whom treatment completion is expected within the 2022 data. For people treated for MDR or RR TB, outcomes are reported for those notified up to and including 2020. For further definitions of TB treatment cohorts please see the [Methodology and definitions chapter]accompanying data set.

Mutually exclusive treatment outcome categories are shown in Table 3 below for people treated for non-MDR or non-RR TB without CNS disease notified in 2021, by 12 months since start of treatment:

• 84.2% had completed treatment
• 4.0% had died
• 2.6% were lost to follow up
• 2.9% were still on treatment
• 1.8% had stopped treatment

Table 3. Treatment outcome at 12 months and last recorded outcome for people notified in 2021 treated for non-MDR or non-RR TB with expected treatment duration less than 12 months, England, 2022

	TB treatment outcome at 12 months (n)	TB treatment outcome at 12 months (%)	Last recorded TB treatment outcome (n)	Last recorded TB treatment outcome (%)
Treatment completed	3,245	84.2	3,426	88.9
Died	154	4.0	157	4.1
Lost to follow-up	101	2.6	111	2.9
Still on treatment	112	2.9	10	0.3
Stopped	69	1.8	74	1.9
Not evaluated	172	4.5	75	1.9
Total	3,853	100	3,853	100

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

Overall treatment completion increased to 88.9% for last recorded treatment outcome. Twelve-month TB treatment outcomes for this cohort for notifications from 2001 to 2021 are shown in Supplementary Table 11 of the accompanying data set.

Of those notified in 2021 and reported to still be on treatment at 12 months (112 people, Table 3) 99 (88.4%) subsequently completed treatment as their last recorded outcome. At the time of data close, 9 were still on treatment, 1 was lost to follow-up, 1 died and 2 people had their treatment stopped. Of those notified in 2021 and reported as not evaluated at 12 months (172), 81 (47.1%) were subsequently reported as treatment completed, 2 died, 10 were lost to follow-up, 1 was still on treatment, 3 people had their treatment stopped and the rest remained as non-evaluated. Last recorded treatment outcomes for this cohort notified from 2001 to 2021 are shown in Supplementary Table 12 of the accompanying data set.

For the above cohort in 2022 there was no significant change in the 12-month TB treatment completion rate compared with previous years and it has remained static at around 84 to 85%. When observed over the longer term, treatment completion at the last recorded outcome has not changed since around 2007, varying between 82% and 88%, from a low of 65.1% in 2001 (Supplementary Table 12 of the accompanying data set).

Treatment completion in those with and without a social risk factor  

In 2022, 12-month TB treatment completion in people notified in 2021 treated with a first line regimen with one or more SRFs was 75.7%, significantly lower than in those without a SRF (85.7%, 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 data set. The proportion of those not evaluated for the 2021 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 4.0%, lower than the previous high of 5.1% in those notified in 2020 (p = 0.02) and similar to most other years. However, this year there were 3 further deaths reported in the last recorded outcome (Table 3) resulting in a marginal increase in the proportion of people who had died at their last recorded outcome to 4.1%. The proportion of persons lost to follow-up is the lowest recorded but not evaluated the highest. 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 2011 to 2021 who did not complete treatment within 12 months and expected treatment duration less than 12 months, England, 2022

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

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 data set. They are reported:

• treatment completion by age group from 2012 to 2021 in Supplementary Table 13
• treatment outcomes by age and sex for notifications in 2021 in Supplementary Table 14
• treatment outcomes by UKHSA region for notifications in 2021 in Supplementary Table 15
• treatment completion by UKHSA region from 2012 to 2021 in Supplementary Table 16

Treatment completion has consistently decreased with increasing age group. In 2021 treatment completion was 92.5% in children aged 14 years or less compared with 71.8% in adults aged 65 years or more (p<0.001 for trend). In 2021, when further disaggregated further by sex, males of all age groups had lower treatment completion and more loss to follow up.

Treatment duration

Of those notified in 2021 who were expected to complete treatment within 12 months 97.9% had a recorded treatment end date (3,366 out of 3,439). Of these 42.5% completed within the standard 6 months and a further 30.2% in 6 to 8 months and 5.3% took more than 12 months to complete treatment. These proportions have changed little over the previous 10 years (Supplementary Table 17 of the accompanying data set).

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 2021 are shown in Table 4 and for notification years from 2012 to 2021 in Supplementary Table 18 of the accompanying data set. At the last recorded outcome, 80.8% of people notified in 2021 had completed treatment, whilst 2.2% 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 10.1% but lower than those notified in 2020 at 12.7%, which similar to the mortality rate in the non-severe cohort was the highest recorded.

Table 4. Last recorded treatment outcome for people notified in 2021 with non-MDR or non-RR TB with CNS disease, England, 2022

	Last recorded TB treatment outcome (n)	Last recorded TB treatment outcome (%)
Treatment completed	367	80.8
Died	46	10.1
Lost to follow-up	11	2.4
Still on treatment	10	2.2
Stopped	8	1.8
Not evaluated	12	2.6
Total	454	100

Note: excludes those with post-mortem diagnosis.

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 data set:

• by year of notification, 2012 to 2021 in Supplementary Table 19
• by site of disease in 2021 notification year Supplementary Table 20
• by UKHSA region in 2021 notification year Supplementary Table 21

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 89.2%. The proportion of people who had died at their last reported outcome was 4.7% for those notified in 2021, less than the previous high of 6.0% for people notified in the peak pandemic year of 2020 and equivalent to the 10-year average.

For people notified in 2021, the proportion of people who had died was greater in those who were notified with pulmonary disease, both with other sites of disease (1,929 completed treatment; 7.2% died) or without (1,308 completed treatment; 6.5% died), compared with people notified with extrapulmonary disease only (1,864 completed treatment; 2.0% died).

People notified with miliary TB, cryptic TB and TB meningitis had the highest proportions of deaths (88 completed treatment, 20.5% died; 32 completed treatment, 21.4% died and 70 completed treatment, 15.8% died) compared with extra-thoracic lymph node TB (891 completed treatment, 1.1% 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 from 2019 to 2021 combined. In 2022 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 2019 to 2021 (aggregated data, univariable analysis)

Notes
1. 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.
2. Non-MDR TB, 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 2021 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 5.4% out of 4,340 people.

Out of 203 deaths of people in this cohort notified in 2021, TB was reported to have caused or contributed to death for 42.9%, was incidental to death for 24.6% and was unknown in 28.1% and missing in the remaining 4.4%. 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 203 people who died, 174 (85.7%) had a known treatment start date, of whom, 56.9% were reported to have died within 60 days of starting treatment. Twenty-two died before starting treatment (10.8%).

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. 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 4.3% of the analytical cohort; adjusted RR 3.37, 95% CI 2.68 to 4.23) and those with comorbid chronic liver disease (affecting 1.4% of the analytical cohort; adjusted RR 3.1, 95% CI 2.38 to 4.03). Whereas pulmonary TB affecting 52.9% of the population was associated with a more than double risk of death (Adjusted RR 2.14; 95% CI 1.81 to 2.52) and of similar magnitude to risk associated with having severe CNS TB disease.

Figure 5. Factors associated with death (last recorded outcome) for people treated for non-MDR or non-RR TB, England, notified in 2019 to 2021 (aggregate data, adjusted for age group)

Notes
1.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.
2. 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 data set.

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 2020. The 2020 cohort comprised 62 people treated for MDR or RR TB. 54 of these were culture confirmed MDR or RR TB at diagnosis, of whom 12 had pre-extensively drug resistant (pre-XDR) TB and one had XDR TB (see Table 14 in the ‘TB Diagnosis, microbiology and drug resistance in England’ data set).

Treatment outcome at 24 months and last recorded outcome for persons treated for drug-resistant TB notified in 2020 are shown in Table 5 and for notification years 2012 to 2020 in Figure 6 and Supplementary Tables 25 and Table 26 in the TB treatment in England data set. A total of 46 people notified in 2020 completed treatment within 24 months. Two people completed treatment after 24 months, bringing overall treatment completion for people notified in 2020 to 77.4%. Although overall treatment completion for people with MDR or RR TB has remained similar from 2011 to 2020, there has been an increase in treatment completion within 24 months, from 54.6% in 2011 to 74.2% in 2020 Supplementary Table 26 in the accompanying data set.

Table 5. Treatment outcome at 24 months and last recorded outcome for people treated for MDR or RR TB notified in 2020, England, 2022

	TB treatment outcome at 12 months (n)	TB treatment outcome at 12 months (%)	Last recorded TB treatment outcome (n)	Last recorded TB treatment outcome (%)
Treatment completed	46	74.2	48	77.4
Died	4	6.5	4	6.5
Lost to follow-up	5	8.1	5	8.1
Still on treatment	3	4.8	1	1.6
Stopped	1	1.6	2	3.2
Not evaluated	3	4.8	2	3.2
Total	62	100	62	100

Figure 6. Proportion of people treated for MDR or RR TB with treatment completion at 24 months or last recorded outcome notified in 2011 to 2020, England 2022

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

Treatment outcomes at 24 months for people with MDR or RR TB notified from 2011 to 2020 and who did not complete treatment are shown in Figure 7 below and in Supplementary Table 25 of the accompanying data set.

Figure 7. Breakdown of outcomes of people treated for MDR or RR TB, notified in 2011 to 2020 who did not complete treatment within 24 months, England, 2022

Data underlying this figure is available in Supplementary Table 25 in the accompanying data set.

For people notified in 2020 who completed treatment, time to completion was known for all with 18 out of 48 completing in 18 to 20 months (37.5%) (Supplementary Table 27 of the accompanying data set).

Deaths in the MDR or RR TB cohort

In 2022, there were 4 deaths in people notified in 2020 and treated for MDR or RR TB. None of these were diagnosed post-mortem. Two were recorded as TB causing or contributing to death and 2 as unknown. One death occurred before treatment was started and on the same day as diagnosis and notification. The remaining death occurred after the first 4 months of treatment.