NICE: New guidance points the way to tackling tuberculosis among hard-to-reach groups

The guidance sets out how commissioners and providers of TB services and other statutory and voluntary organisations that work with hard-to-reach groups can achieve better outcomes through targeted action to find patients early, and by providing intensive clinical and social support to help them complete TB treatment.

According to provisional figures published today by the Health Protection Agency (HPA), in 2011 there were 9,042 reported cases of TB in the UK (an increase of 5% from new cases reported in 2010), almost seventy five per cent of which were among people born outside the UKi. Most cases (40%) were reported in Londonⁱ which, as a result, has been a focus of TB control efforts. Although TB is curable in virtually all cases, treatment with antibiotics is usually lengthy (over a period of many months) and the likelihood of people in hard-to-reach groups not completing treatment is high, compared to the general population. Patients who do not complete treatment are at risk of a relapse. They may also develop a drug-resistant form of the disease which is more difficult and slower to treat - and which can also be transmitted to other people (one untreated person with pulmonary TB can infect 10-15 people every yearⁱⁱ). Not surprisingly, the incidence of drug resistant TB is disproportionately high in these groups.

Traditional hospital and primary care services are not always the best way of reaching and treating some groups of people, and services can be hard to access for some vulnerable people. People who are hardest to reach include those with drug or alcohol addiction, vulnerable migrants, homeless people, and prisoners - they can all find it difficult to recognise TB symptoms and access diagnostic and treatment services. They may also have problems in self-administering treatment, and attending regular appointments for clinical follow-up. This can lead to incomplete treatment with serious consequences.

The guidance is aimed at commissioners and providers of TB services, including the NHS Commissioning Board and Public Health England, and other statutory and voluntary organisations that work with hard-to-reach groups. The recommendations are wide-ranging and cover, among other things: strategic oversight and commissioning of TB prevention and control activities; local needs assessment; commissioning multidisciplinary TB support; the provision of rapid access TB services; raising and sustaining awareness of TB among hard-to-reach groups, health professionals and those working with hard-to-reach groups; and identifying and managing latent TB among substance misusers and prison populations and identifying pulmonary TB among those accessing homeless or substance misuse services.

Professor Mike Kelly, NICE Director of Public Health, said: "TB is still a serious public health issue, the burden of which falls disproportionately on the most vulnerable groups in our society. The factors that make these groups vulnerable are also those that make them harder to reach through traditional TB services, and also make them less likely to adhere to treatment. This guidance therefore advocates a more proactive approach through, for example, active case-finding which involves seeking evidence of infection or disease among people who might not otherwise present for care in a timely manner. It recommends finding active TB among homeless groups by using mobile X-ray teams in places where they congregate, such as homeless day centres, rolling shelters, hostels and temporary shelters.

"The guidance also recommends that all hard-to-reach TB patients should receive community based clinical and social support co-ordinated by a TB case worker. Support should include directly observing every dose of treatment and providing practical help with housing, addiction and other unmet health and social care problems. TB is curable, so it's important that people at risk of TB from hard-to-reach groups are able to access services tailored to their needs that allow timely diagnosis and effective treatment."

Andrew Hayward, UCL Department of Infection and Population Health and Chair of the Programme Development Group, said: "Although many people think of tuberculosis as a problem of the past, levels of disease are increasing in London and other major cities. The development of multidrug resistant tuberculosis and extremely drug resistant tuberculosis threaten our ability to treat the disease in the future. Tackling the problem requires investment in the development of TB teams so that they can reach out into the community to find tuberculosis in hard-to-reach groups earlier and support patients to take a full course of treatment. The guidance recommends screening for tuberculosis at hostels for homeless people, prisons and drug treatment centres and shows how TB teams can work in partnership with other services to support even the most complex patients to complete their treatment."

Bertie Squire, member of the Programme Development Group and Professor of Clinical Tropical Medicine, Liverpool School of Tropical Medicine, said: "The guidance sets out how services can and must respond to the needs of hard-to-reach populations. In essence it is our services that are currently hard-to-reach for these vulnerable populations, not the people with TB who are hard to reach. Unless we change our current mind-set and service delivery model, TB transmission will continue unchecked and will affect an ever-growing number of people, including those we would not currently characterise as ‘hard-to-reach'. As an air-borne communicable disease, TB does not stay confined to any given population, even if it disproportionately affects those who are poor and marginalised. The guidance makes it clear how we can work together in a cost-effective way to check and reverse current trends in the UK epidemic of TB."

Elias Phiri, member of the Programme Development Group and Head of Awareness Programmes - TB Alert, said: "Third sector organisations working with hard-to-reach communities, for example homeless people and vulnerable migrants, are key partners in identifying and managing TB. This NICE guidance describes how statutory organisations can effectively work in partnership with the third sector to help manage and control TB amongst hard-to-reach groups, which can help reduce local TB incidence."

Professor Ibrahim Abubaker, member of the Programme Development Group and Head of TB section at the Health Protection Agency said: "Tuberculosis continues to disproportionately affect those in hard-to-reach groups, so it is crucial that we have specific strategies in place to address this. This new guidance provides useful and comprehensive recommendations on the best approaches to identifying TB in vulnerable individuals, as well as ensuring they complete treatment. We welcome the recommendation that puts the responsibility on each local health economy to plan services based on a health needs assessment"

Helen Bromley, member of the Programme Development Group and Speciality Registrar Public Health, Wirral University Teaching Hospital NHS Foundation Trust, said: "The guidance represents an important step in improving the way TB is identified and managed in people who find accessing and/or completing treatment difficult. Based on the current evidence base, the recommendations set out how commissioners, health and social care practitioners, and the voluntary sector can work together to improve TB services. This will speed up diagnosis, treatment and cure, whilst reducing onward transmission to the general population, drug resistance and health inequalities."

Ends

Notes to Editors

References and explanation of terms

i. Health Protection Agency 2012.

ii. DH 2004

About TB

1. TB is an infectious disease, which, if left untreated, can be fatal. TB that infects the lungs is the most common and is spread by one person inhaling the TB bacteria in droplets coughed or sneezed out by someone with infectious TB. In over 80% of people the immune system kills the bacteria and they are removed from the body. However, in a small number of cases the TB bacteria are not killed and lie dormant (latent TB). Up to 15% of adults with latent TB will go on to develop active TB at some point in their lives and the risk in children may be much higher. In people who are immunocompromised - for example, if they are HIV positive - the chance of developing active TB within five years of infection is up to 50%.

2. Although TB is much less common since antibiotics were introduced, it remains an important public health issue. In 2011, 9042 cases of TB were reported in the UK (provisional figures from the Health Protection Agency, 23 March 2012). Most of these occurred in urban centres, with over one-third of cases in London.

3. Other areas with a high number of cases of TB include the West Midlands (1018 cases in 2011) and the South East (860 cases in 2011).

4. While most people with TB were born outside the UK (74%), the highest risk of disease is among homeless people, prisoners and problem drug users.

5. It is estimated that 9% of cases in the UK had at least one of the following risk factors: drug misuse, alcohol misuse, a prison history or homelessness.

6. The cost of treating ‘normal' TB is around £5000. However the costs are much greater for more socially complex cases. This is due to the need for more frequent and longer hospitalisation episodes, higher treatment support costs and the higher cost of treating drug-resistant (including multidrug resistant) disease. It costs an estimated £50,000-£70,000 to treat the latter (DH 2009).

7. The proportion of drug-resistant cases of TB is higher among those with a history of drug or alcohol use, imprisonment or homelessness (11.2% compared to 6.9% for those without any of these risk factors) (Health protection agency Tuberculosis in the UK: 2011 report).

About the guidance

1. The guidance will be available from Friday 23 March at http://guidance.nice.org.uk/PH37

2. This guidance is for NHS and other policy makers, commissioners, managers and practitioners who have a direct or indirect role in, and responsibility for, identifying and managing TB. This includes those working in local authorities, the criminal justice system, drug and alcohol services and the wider public, private, voluntary and community sectors

3. NICE has produced a number of tools to support the implementation of the guidance. These include:

a. Local costing template and costing report

b. Baseline assessment tool

c. Shared learning examples from high and low incidence areas (including sample documentation such as policies, care plans and housing contracts)

About NICE

1. The National Institute for Health and Clinical Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health.

2. NICE produces guidance in three areas of health:

• public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
• health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
• clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.

3. NICE produces standards for patient care:

• Quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
• Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients.

4. NICEprovides advice and support on putting NICE guidance and standards into practice through its implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.