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Tuberculosis: Migrant experiences of health care access.

Full title: Tuberculosis and recent migration to the UK: Examining new-entrant health screening and delays to diagnosis from the patient's perspective.

Acronym: TBC

Research Funder: Medical Research Council UK

Research Groups: Complex Intervention and Social Practice in Health Care and  Global Health, Policy and Innovation Unit

Research status: Ongoing

BACKGROUND

Tuberculosis (TB) is an infectious disease. In 2012 there were 9.3 million new cases of active TB worldwide and over 9,000 in the UK. TB is transmitted by coughing from a patient with disease affecting the lungs. For those in contact with them, who themselves breath in the TB bacteria, 3 things might happen: their immune system may clear the infection completely; they may become unwell with TB (active TB); or the bacteria may enter the body and remain there ‘dormant’ - latent TB infection. Approximately one third of the world’s population is thought to be infected with TB. Of these, approximately 1 in 10 will go on to develop active TB at some point in their life. Diagnosis and prophylactic treatment of latent TB can reduce an individual’s risk of developing active disease in the future and is an important tool in reducing rates of TB both in the UK and elsewhere.

AIM

This project will examine two patient journeys: the first is their journey from migration to arrival in the UK and experience of TB screening; the second will explore illness pathways from initial symptoms of TB to health-seeking behaviours and healthcare encounters.  The study will be set in east London. Barts Health NHS Trust is the largest TB service in the country and treats approximately 700 new cases of TB per annum.

TB SCREENING

To reduce the spread of infectious TB several strategies for TB screening exist in the UK.  Some of these processes have recently changed. Screening when someone enters the country has been phased out. A new system of pre-entry screening in a migrant’s country of origin has been implemented.  Some GPs screen patients when they register.  However, most TB screening programmes target active TB which affects the lungs therefore missing the 50% of TB which affects other parts of the body and also missing latent TB infection.  It is also unclear what proportion of patients who develop active TB in this country do not undergo screening because they fall outside these pathways.

ACCESS TO HEALTHCARE

Many patients with undiagnosed active TB attend Emergency Departments rather than their GP.  Some have been unwell for months. When people who have recently moved to this country do become unwell, they often struggle to access healthcare services. This can cause a delay in diagnosis, resulting in wider spread of disease, higher costs, greater illness and even death.

METHODS

Participants for this study will be recruited from TB clinics.  The research will be conducted by a doctor who has significant experience working within the local community and with TB patients. Patients will be asked for their written consent and information will be collected from a questionnaire and an interview.  Patients will be asked to tell their stories from migration through to diagnosis without interruption.  To ensure the specific issues surrounding TB screening and healthcare access are covered, a limited number of more direct semi-structured interview questions will be used to ‘fill in the gaps’ of the patient’s narrative.

OUTCOMES

This project will provide detailed insight into the limitations of the current systems for TB screening and healthcare provision for migrants. Outcomes will include specific and detailed policy recommendations about how the organisation of these services could be more effective and accessible. The results will highlight key strategic areas which should be targeted with a view to reducing the disease burden of TB in the UK. The findings will also be applicable to migrant groups within other settings (and with other infectious diseases) and to TB screening in major urban centres within countries of low TB prevalence.

Investigators

Chief investigator:

Dr Jessica Potter MRC Population Health Scientist PhD Research Fellow Email: jessica.potter@qmul.ac.uk

PhD Supervisors:

Professor Chris Griffiths

Dr Deborah Swinglehurst

Dr Veronica White

Research Aims:

OVERALL OBJECTIVE 1

TB screening: To describe the experiences of recent migrants to the UK who have been diagnosed with active TB.

SPECIFIC OBJECTIVES

  • To understand the screening processes which TB patients, who have recently entered the UK, undergo.
  • To determine the proportion of recent migrants with active TB who ‘slipped through the net’ of current TB screening strategies and to explain why this occurred by exploring the patients’ stories.
  • To identify common themes and threads which can be used to develop new screening strategies or improve existing ones so that a larger proportion of the at-risk population are screened for TB, thus reducing TB incidence in the future.
  • To determine the socio-economic background of participants and explore this in relation to their experiences of TB screening.

OVERALL OBJECTIVE 2

Access to healthcare: To determine how migrant patients who have been recently diagnosed with active TB describe their experiences of illness and of accessing healthcare services in the UK.

SPECIFIC OBJECTIVES

  • To map the pathways to diagnosis of recent migrants to the UK from onset of symptoms to eventual diagnosis with active TB and to explore the reasons behind the patient’s decision-making process along this journey.
  • To identify common ‘road blocks’ on the journey to diagnosis which are experienced by patients when they become unwell with TB.
  • To determine the socio-economic background of participants and explore this in relation to their experiences of healthcare access.

OVERALL OBJECTIVE 3

To determine the opinions and experiences of key professionals (including healthcare workers, policy-makers and local community members) of TB screening and healthcare access.

SPECIFIC OBJECTIVES

  • To understand the challenges health professionals perceive in relation to TB screening.
  • To explore the attitudes and understanding of professionals in relation to healthcare access for migrant populations.

Inclusion/ Exclusion Criteria:

Inclusion Criteria (for patient participants)

Diagnosis of TB within the last 4 months, confirmed by Barts Health NHS Trust.

  • TB treatment commenced.
  • Migrated to the UK within the last 3 years

Exclusion Criteria (for patient participants)

Lack of capacity to consent to involvement in the study.

  • Children (patients aged under 18 years of age).
  • Later change of diagnosis to a non-TB diagnosis.
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