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An evidence-based partnership approach to tackling Tuberculosis in Prisons and Immigration Removal Centres in London

Abstract

Background

The World Health Organization (WHO) have declared TB as a global emergency with 8.6 million cases of active TB and 1.3 million deaths. The incidence of TB in the UK remains high compared to most other Western European countries, with 8,751 cases reported in 2012, an incidence of 13.9 per 100,000 population. London accounts for the highest proportion of cases in the UK (39%) and the highest rate of disease (41.8 cases per 100,000). Left untreated, one person with pulmonary TB may infect around 10–15 people every year. People in prison and IRCs represent a population who are at particular risk. National estimates for TB prevalence in the prison population are 208 per 100,000 and amongst London’s 10,000 or so prison population we would expect 20 cases, but we are seeing more than double. The cost of treating ‘normal’ TB is around £5000 and is much greater for more socially complex cases (estimated at £50,000–£70,000). There is considerable variation in the delivery of some aspects of TB services. A co-ordinated national TB strategy is required to support locally designed and implemented services, and monitor achievements against national standards. This paper presents findings from a partnership between NHS England, PHE and NOMS to tackle TB across its prison population in the overall approach to the overall TB strategy in London.

Aims/objectives

To establish whether national NICE guidance for TB in prisons and immigration removal centres is being met.

Methods

Target population included all 9 prisons and 3 IRCs for which NHS England (London region) are responsible. Methods used: 1) An organisational clinical audit during January 2014 using the NICE baseline assessment tool; 2) Stakeholder engagement through a steering group and a wider reference group.

Results

Effective stakeholder engagement contributed to a 100% completion rate. All establishments had referral pathways in place and a named contact within the local Multidisciplinary TB team and the local Public Health England health protection team. 2/12 establishments did not screen for TB within 48 hours of arrival. 3/12 did not have a local TB policy. 2/12 did not have a named TB lead. None of the DH funded x ray machines were being used in line with NICE recommendations. Latent TB was not being diagnosed or managed.

Conclusions

Active and systematic case finding is needed within a prison and IRC setting as well as more rigorous and standardised contingency and follow up care plans after release (or transfer).

Introduction

The World Health Organization (WHO) have declared TB as a global emergency with 8.6 million people with TB and 1.3 million deaths due to TB (World Health Organisation, 2013). The six point Stop TB Strategy (World Health Organisation, Europe, 2013b) explicitly addresses the key challenges facing TB with the goal to dramatically reduce the global burden of TB by 2015 by ensuring all TB patients benefit from universal access to high-quality diagnosis and patient-centred treatment. However, there have been challenges in developing and implementing program-wide interventions in both high income(Migliori, Sotgiu, Blasi, et al., 2011) as well as middle and low income countries(Cobelens, van Kampen, Ochodo, et al., 2012). England and Wales have responded to the need to tackle TB where the NHS and the Department of Health have developed a national Action Plan for ‘Stopping Tuberculosis in England’(Department of Health, 2004). NICE have also developed a set of National guidance for the identification and management of TB across a number of settings(NICE public health guidance, 2011) which highlights the need for a multi-agency approach. There has been little evidence evaluating the implementation of these guidance.

What is TB?

TB is caused by Mycobacterium tuberculosis, which spreads in airborne droplets when people with the disease cough or sneeze. Most people infected with M. tuberculosis never become ill as their immune system contains the infection. However, the bacteria remain dormant (latent) within the body, and a latent TB infection can cause active disease many years after the initial infection if immunity declines. The symptoms of TB include a persistent cough, weight loss, and night sweats.

The BCG vaccine (Bacillus Calmette-Guérin vaccine) protects against TB and it was thought possible to wipe out TB through a vaccination programme. The BCG vaccine is made from a weakened form of a bacterium closely related to human TB. Because the bacterium is weak, the vaccine does not cause any disease but it still triggers the immune system to protect against the disease, giving good immunity to people who receive it. In the past, the BCG vaccination programme was delivered to all teenagers in the UK but as TB is a difficult disease to catch because it requires prolonged exposure to an infected person, it was changed so that now only people inat-risk groups are given the vaccination. The vaccine is 70-80% effective against the most severe forms of TB, such as TB meningitis in children but It is less effective in preventing respiratory disease, which is the more common form in adults(Trunz, Fine & Dye, 2006). Even with the high coverage now achieved, BCG is unlikely to have any substantial effect on transmission.

Risk factors that seem to be of importance at the population level include poor living and working conditions associated with high risk of TB transmission, and factors that impair the host’s defence against TB infection and disease, such as HIV infection, malnutrition, smoking, diabetes, alcohol abuse, and indoor air pollution. Preventive interventions may target these factors directly or via their underlying social determinants. The identification of risk groups also helps to target strategies for early detection of people in need of TB treatment(Lönnroth, Jaramillo, Williams, et al., 2009).

How common is TB in the UK?

It has been difficult to eradicate TB both globally and in the UK. Vaccination programs and improvements in housing, nutrition and access to treatment have been largely the reason for a global decrease in TB. However, TB is still rife in less developed countries where poor conditions are still present. Several strains of TB bacteria have developed a resistance to one or more anti-TB medications, making them much harder to treat. Theglobal epidemic of HIV that began in the 1980s has also led to a corresponding epidemic of TB cases. This is because HIV weakens a person’s immune system, making them more likely to develop a TB infection. The rapid growth of international travel has allowed people to travel widely and this has helped to spread of the disease.

Although the rates of TB have stabilised in the UK over the past seven years, following the increase in the incidence from 1990 to 2005, the incidence of TB in the UK remains high compared to most other Western European countries(Hayward, Darton, Van-Tam, et al., 2003). There were 8,751 cases reported in 2012, an incidence of 13.9 per 100,000 population (Health Protection Agency, 2013b). The majority of TB cases (73%) occurred among people born in high-incidence countries and are generally concentrated to large urban areas with a high proportion of people born outside the UK where the rate of TB among the non UK-born population is almost 20 times the rate in the UK-born (Health Protection Agency, 2013b).

London accounts for the highest proportion of cases in the UK (39%) and the highest rate of disease (41.8 cases per 100,000), followed by the West Midlands (12%; 19.3 cases per 100,000). Left untreated, one person with pulmonary TB may infect around 10–15 people every year (Department of Health, 2004).

TB in prisons

It is important to identify settings where the risk of TB transmission is particularly high. Groups at risk not only include people born in high prevalence areas (e.g. sub-Saharan Africa, South East Asia, Eastern Europe), but also people with reduced immunity (e.g. HIV, diabetes, renal failure), those with alcohol or drug problems and people who are homeless or living in overcrowded conditions (Story, Murad, Roberts, et al., 2007). These risk factors are over represented in prison populations with high levels of social and health needs. A systematic review on the incidence of TB in prisons globally (largely in the USA), showed that TB was about 26x higher than in the general population(Baussano, Williams, Nunn, et al., 2010). In the London prison population, the incidence of TB has been estimated at about 208 per100,000 (Story, Murad, Roberts, et al., 2007).

Figure 1: Incidence of TB in different locations and settings[A1]

Across the London prison and IRC estate, prisons are at or very close of operational capacity (ranging from 72% – 103%) and with the high churn rate which increases the risk of TB transmission and poses significant challenges for TB identification and management (see Table 1). In addition, a significant proportion of the prison population are of a foreign nationality (up to 44% in one prison) and on average, just over one quarter (27%) of the prison population are foreign nationals. The majority of the prison and IRC population are under the age of 39 years old, representing another TB risk factor.

Table 1: Summary of Prison Establishments

Individuals at high risk for TB are typically unwilling or unable to seek and comply with medical care, and are therefore hard to reach. Individuals at high risk are also more likely to be diagnosed at a late stage of the disease and are less likely to adhere to treatment(Health Protection Agency, 2013b). In prison and IRC settings, overcrowding, late detection, barriers to adequate treatment, and poor implementation of infection control measures might also increase the TB transmission rate and improving prison conditions is a priority for any programme to control TB and reduce its spread back into the community (Levy, Reyes & Coninx, 1999).

TB has been identified as a key health concern where the need for greater TB control in the prison setting was highlighted in the Chief Medical Officer’s (CMO) action plan for England (Department of Health, 2004). The Department of Health (DH) announced that they were to fund the installation of static Digital X-Ray (DXR) machines in large local prisons receiving people from areas with a high prevalence of TB. This led to the installation of DXR machines in 5 London prisons (and 3 out of London). All participating prisons had their machines signed off and handed over by March 2012 but due to changes in commissioners and providers during the lifetime of the project, the impact of the programme to date has been variable. More recently, the new national partnership agreement(Anon, n.d.) just signed between Public Health England (PHE), NHS England (NHSE) and the National Offender Management Service (NOMS) also draws particular focus and commitment to the epidemiology of TB in prisons, particularly in those that have access to DXR machines. The agreement sets a priority for this year (2013-14) as:

“Priority 11: Improving the detection and management of TB among prisoners at or near reception.”

The commitment in the partnership agreement is to ensure that by April 2014, NHSE, NOMS and PHE will ensure that all fixed digital X-ray machines are fully operational and being used as part of an active care pathway in those prisons where they are currently installed.

TB in IRCs

Robust data relating to TB in IRCs is not routinely collected or available so there are no estimates of the incidence of TB in these settings. However, a sample of detainees in a single IRC within Southern England identified prevalence rates of 3% for TB (McLaren, Baugh, Plugge, et al., 2013) which is considerably higher than those found among the migrant population in England (Health Protection Agency, 2013b). Detainees at Harmondsworth and Colnbrook are men mostly aged 20-40 (see Table 1) and from disadvantaged areas of the world where TB is still rife. The average length of stay is around 2 weeks; although some have been detained for over 1 year.

Guidance for best practice

NICE have developed national guidance on the ‘Clinical diagnosis and management of tuberculosis, and measures for its prevention and control(NICE public health guidance, 2011), as well as more specific guidelines for identifying and managing TB among hard to reach groups (NICE public health guidance, 2012). This guidance, consistent with World Health Guidance(World Health Organisation, Europe, 2013a), aims to improve the way tuberculosis (TB) among hard-to-reach groups is identified and managed and makes specific reference to using prison and IRC settings to target these groups. NICE recommend that early identification and effective treatment of active TB provides the best outcomes, reduces onward transmission and reduces the development of drug-resistant forms of the disease. The identification and management of latent TB infection is also highlighted.

The NICE guidance is based on the evidence resulting from four large systematic reviews(NICE, 2012a, 2012b, 2012c, 2012d) which informed the key recommendations relating to TB in prisons and IRCs. These include the best ways to identify TB, manage TB, organisational factors and identifying and managing latent TB.

Identifying TB

There are several approaches to identify latent and/or active TB in different populations. The Mantoux test is a widely used test for latent TB. It involves injecting a substance called PPD tuberculin into the skin and those that are sensitive to PPD tuberculin will develop a hard red bump at the site of the injection, usually within 48 to 72 hours of having the test. This is indicative of a latent TB. A very strong skin reaction may require a chest X-ray to confirm if this is an active TB infection(NHS Choices, 2013).

The interferon gamma release assay (IGRA) is a newer type of blood test for TB that is becoming more widely available and can also help diagnosis latent TB. It can be used after a positive Mantoux test or as part of a screening or health check process.

An active TB infection is usually diagnosed from a chest X-ray and samples of mucus and phlegm which are checked under a microscope for the presence of TB bacteria. A CT scan, MRI and/or biopsy will also be taken if an extra-pulmonary TB is suspected.

A lack of information and awareness about TB services has been highlighted as a barrier to successful identification of TB (Brent Refugee Forum, 2007). Studies have highlighted that members of hard-to-reach groups frequently report incomplete or inaccurate information about the cause and transmission of TB with misconceptions included dirty or wet environment, sharing of domestic objects, and punishment from God (Brent Refugee Forum, 2007). Smoking(Brent Refugee Forum, 2007; Brewin, Jones, Kelly, et al., 2006; Gerrish, Ismail & Naisby, 2010), poor diet and malnutrition(Brewin, Jones, Kelly, et al., 2006; Gerrish, Ismail & Naisby, 2010), poverty (Brewin, Jones, Kelly, et al., 2006) however, were correctly perceived to affect susceptibility to TB. The fear of medical services as well as anxiety around the associations of TB with death have also been highlighted as barriers to diagnosing TB in high risk groups (Gerrish, Ismail & Naisby, 2010; Marais, 2007; Brent Refugee Forum, 2007).

Stigma is also highlighted as a major issue when diagnosing and screening for TB. Most studies with hard to reach groups describe a sense of shame and forced or voluntary isolation resulting from a TB diagnosis, although stigma was expressed differently in different groups. Homeless participants in London reported that being diagnosed with TB was embarrassing and rarely discussed among the homeless community because of the stigma attached to TB in this population(Whoolery, 2008). TB patients often face dual stigma—from their own communities and their wider communities. Most studies looking at the barriers to identifying TB have been conducted in immigrant groups in community settings and there is a lack of research into the barriers to identifying TB in prison or IRC populations. In addition, there are limited studies that focus on how to improve these passive case detection approaches or contact tracing approaches.

With the difficulties in identifying TB in these hard to reach groups, researchers have sought to evaluate the effectiveness of active screening for TB rather than a passive approach where it is up to the individual to make contact with health services. Active screening has been found to be an effective and cost-effective strategy in immigrants and new entrants (Laifer, Widmer, Simcock, et al., 2007; Monney & Zellweger, 2005; Verver, Bwire & Borgdorff, 2001), homeless and intravenous drug users(Watson, Abubaker, Story, et al., 2007) in identifying active TB cases are an early stage. In particular, the “Find&Treat” service, which is a Department of Health-funded initiative, aims to strengthen tuberculosis (TB) control among hard-to-reach populations through active case finding using a mobile X-ray unit (MXU)(Jit, Stagg, Aldridge, et al., 2011). In addition, the Find&Treat service follows up closely those on treatment and provides support in completing treatment. Although the service used to screen a large number of prisoners, it had mostly stopped since the introduction of DXR machines in prisons for active case finding in new inmates. On average, each year the ‘find and treat’ service identified 16 people with TB in the hard-to-reach population, who may not have been identified and treated and also managed and supports the treatment for a further 100 or more cases. Despite these studies, there is limited direct evidence for the best methods for screening for TB in prisons(NICE, 2012b).

Puisis et al conducted an innovative program of high speed radiographic screening for pulmonary tuberculosis (TB) at a large American correctional facility. The case finding rate for active disease with radiographic screening was approximately double the rate previously achieved with Mantoux skin testing. (Puisis, Feinglass, Lidow, et al., 1996). However, the findings are unclear how much of the difference in prevalence is caused by the different screening strategies and how much reflects different baseline disease prevalence. Another retrospective cohort study, compared the potential impact of limiting screening with mobile X-ray units to prisoners in the UK with symptoms of TB, compared with universal screening regardless of symptoms. Restricting screening just to prisoners with any of the five symptoms would have missed 36.7% of TB cases and more cases of TB would have been missed if screening was limited to a smaller range of symptoms. (S Yates; A Story; AC Hayward, 2009). The study is limited because although these symptoms may have been present at the time of screening, it is not known if professionals would have screened for TB based on these symptoms in real practice. Mobile X-ray unit (MXU) screening in those that are homeless, drug users or in prison have also been found to reduce diagnostic delay compared with passive case-detection and cases were less likely to be contagious on diagnosis compared with passive case-detection (Watson, Abubaker, Story, et al., 2007). However, the main limitation of this study is that results for different sub-populations were not reported separately, so it remains unclear whether any one hard-to-reach group benefited significantly from mobile x-ray screening. Chest X-ray screening has also been shown to be more cost-effective than the Mantoux test in immigrants and in prisoners(Jones & Schaffner, 2001). However, the start-up costs of implementing the miniature chest radiograph screening were not taken into account. Considering the technology and training necessary to implement such a tool in a prison setting, this information could have had an effect on the costs.

Active screening seems to increase identification of latent and active TB infection across hard-to-reach groups who are at high risk of infection, compared with passive case-detection, and leads to earlier diagnosis and reduced infective periods in those with active TB. Although the effectiveness and cost effectiveness of mobile X-ray screening is limited in prisons settings, NICE recommend that in prisons housing populations from high incidence areas and where the start-up costs had been largely funded by the DH, it was judged that X-ray screening would be cost effective. For other prisons, initial, symptom-based screening was adequate(NICE public health guidance, 2012).

Managing and treating active TB

Although TBcan be a very serious disease, it is possible to make a full recovery from most forms of TB with treatment. TB can usually be cured by taking several powerful antibiotics daily for several months. However, the emergence of antibiotic-resistant bacterial strains and the poor adherence to treatment has kept TB high up on the international health agenda with WHO declaring a crisis of multidrug resistant TB (World Health Organisation, 2013). The Health Protection Agency has found that only 79% of people with TB in the UK completed treatment which is below the World Health Organisation target of 85% (Health Protection Agency, 2013c). The mix of drug regimes, treatment isolation and length of time of treatment presents a number of challenges to ensure patients adhere to treatment regimes. Adherence can be particularly difficult in those with multiple needs, e.g. homeless and seeking substance abuse treatment (Whoolery, 2008).

Directly Observed Therapy Short course (DOTS) is one method used to increase adherence to TB treatment. DOT is not just the direct supervision of therapy but also considers distinct elements of political commitment; microscopy services; drug supplies; surveillance and monitoring systems and use of highly efficacious regimens (World Health Organisation, Europe, 2013b). It can be difficult to evaluate the effectiveness of DOTS as a complete strategy to increase adherence and the focus of studies have evaluated the direct supervision of therapy. For example, significantly more people adhered to more than six months of treatment when they received DOT in substance misuse(Alwood, Keruly, Moore-Rice, et al., 1994) and in foreign born individuals (MacIntyre, Goebel, Brown, et al., 2003). However, there have been limited studies into prison populations with some suggestions of improved adherence with DOT(Rodrigo, Caylà, García de Olalla, et al., 2002) and other findings showing no significant differences (Dèruaz & Zellweger, 2004). The effectiveness of DOT across prison and IRC populations still remains unclear.

The views of treatment and management of TB can be particularly important when considering adherence. For example, the views on traditional and modern medicine can also vary between different groups which can impact the management of TB. The Brent Refugees Forum reported that Somalis in the UK reported a preference to try traditional medicine as a first choice (Brent Refugee Forum, 2007) whereas Somalis in New Zealand would prefer modern medicine first in response to their experiences of TB related deaths in their home country(van der Oest, Chenhall, Hood, et al., 2005). Some groups preferred approaches to treatment that included both traditional and modern medicines(NICE, 2012a). Talking to the patient to find out their preferences can help patients to make decisions about their treatment based on an understanding of the likely benefits and risks rather than on misconceptions (Nunes V, Neilson J, O’Flynn N, Calvert, N, Kuntze S, Smit, hson H, Benson J,, et al., 2009). Very little is known of the impact of TB treatment on jobs, family and children (NICE, 2012a) and in particular, the psychological impact of isolation. TB treatment should be provided on a voluntary basis and the WHO highlight the importance of “engaging with patients as partners in the treatment process and respecting their autonomy and privacy” (World Health Organisation, 2013). This can be a particularly important issue when concerned with isolating an individual with a suspected or confirmed case of TB, which should be undertaken on a voluntary basis and involuntary isolation should only be used as a last resort.

Few studies have explored the potential benefits that patients may experience when seeking TB treatment. A small number of homeless participants reported that TB treatment helped make further lifestyle changes that improved their health in general. For example, improved living conditions and regaining relationships with family (Whoolery, 2008). Another study reported that immigrants reported a ‘social responsibility’ to seek TB treatment although this was anxiety provoking (Brewin, Jones, Kelly, et al., 2006). Evidence suggests that discussing with the patient why they might benefit from the treatment can improve patient engagement and adherence(Nunes V, Neilson J, O’Flynn N, Calvert, N, Kuntze S, Smit, hson H, Benson J,, et al., 2009).

Organisational factors

Delays in identifying and successfully managing TB can be the result of individual and service provider factors. The provisions used to deliver care and support can determine how services should be structured to manage people with TB in hard-to-reach groups. These organisational factors can include the settings used to identify and manage TB as well as the type and needs of the healthcare worker.

A lack of specialist services and coordination of care can be a major difficulty in TB service provision, since most GPs see few cases of TB a year (Belling, McLaren, Boudioni, et al., 2012; Gerrish, Ismail & Naisby, 2010). The complex social and clinical interactions surrounding a patient with TB can be a challenge to participation and adherence and there is a need for TB link workers to facilitate coordination of services (Brent Refugee Forum, 2007; Belling, McLaren, Boudioni, et al., 2012). Healthcare workers may find it challenging to meet the complex care needs of hard-to-reach groups with TB, especially where there are cultural and language barriers that make it difficult to interpret symptoms and explain about the disease and its treatment (Moro, Resi, Lelli, et al., 2005). In addition, service providers can also be afraid of the consequences of contracting TB, including becoming stigmatised. Non clinical healthcare workers may also have limited knowledge about TB, the need for screening and the implications of a positive test result (Joseph, Shrestha-Kuwahara, Lowry, et al., 2004).

There is considerable variation in the delivery of some aspects of TB services and more research is needed in the UK on the effectiveness and cost-effectiveness of different service structures to manage TB(NICE, 2012d). In addition to the NICE national guidance, Public Health England have produced London specific guidelines on the management of TB in prisons (Health Protection Agency, 2013a) based on pilot work across a number of London prisons. This guidance aims to minimise the risk of transmission of TB within the prison environment through efficient systems to detect ca