Active case finding (ACF) looks for people with tuberculosis in communities who would not otherwise present to health facilities. In doing so, ACF can improve the number of people diagnosed and treated for tuberculosis (TB), as well as reduce onward transmission. Despite being a key strategy of most tuberculosis programmes globally, there is little consideration of how these programmes are experienced by communities - essential in designing appropriate and effective services. 

Tuberculosis is the leading infectious cause of death worldwide, particularly in Southeast Asia and Africa. Worryingly, an estimated third of all tuberculosis cases are ‘missed’ each year, putting around 3 million people at risk of death and severe illness, and maintaining transmission. Those most affected by tuberculosis are also those most likely to have limited access to services, including those facing poverty, lack of education, marginalisation, and limited access to health care. 

ACF brings diagnosis to the communities, through door-to-door screening, contact tracing, or other approaches. However, any screening programme may harm some people, and this must be balanced against the potential for benefit. The LSTM-hosted Cochrane Infectious Diseases Group (CIDG) has carried out a qualitative systematic Cochrane review to synthesize available literature on community views of screening. This is important as their experiences will help to better understand policy in action and the perceived benefit relative to the harm of ACF.

The author team identified 45 studies for inclusion, and sampled from 20, from Africa, South-East Asia, Eastern Mediterranean, and South America. Eligible studies explored community experiences, perceptions, or attitudes towards ACF programmes for tuberculosis in any endemic low- or middle-income country.

Lead author and LSTM researcher Melissa Taylor notes, “ACF brings diagnosis to many of those who may otherwise not have received it. However, our review demonstrates it is essential that ACF is linked to well-resourced follow up services and wider health system strengthening”.

Five themes emerged: 

1. ACF improves access to diagnosis for many, but does little to help communities on the edge, including with out-of-pocket costs necessary to continue care. Migration and difficult geography further reduce communities' access to ACF.
2. Community members find screening frightening. They are afraid of intense treatment regimens and the prospect of living with a serious illness, and find screening also exposes them to discrimination. They may therefore refuse to participate in screening, contact tracing, and treatment.
3. In areas of low investment, people face repeated tests and clinic visits, wasted time, and fraught social interaction with health providers. ACF can also create expectations for follow-up health care that the health system cannot deliver. A lack of full education impacts community members, parents, and health workers, and sometimes leads to harm for children. 
4. ACF can feel difficult for health workers in the context of a poorly resourced health system and poor protection against infection. However, they appear central to programme success, as the humanity they offer often acts as a driving force for retaining people with tuberculosis in care.
5. Local leadership creates an intrinsic motivation for communities to value health services. However, it cannot guarantee the success of ACF and contact tracing programmes and it is important to balance professional authority with local knowledge and rapport. 

Senior author and CIDG Editor Professor Sandy Oliver, based at University College London (UCL), said, “The power of qualitative syntheses like these is in their ability to capture rich information from various contexts to develop a deep understanding of how policies play out in the real world – how services deliver them, how communities receive them or avoid them, what might make them work a little better, and why”.
 

Taylor M, Medley N, van Wyk SS, Oliver S. Community views on active case finding for tuberculosis in low- and middle-income countries: a qualitative evidence synthesis. Cochrane Database of Systematic Reviews 2024, Issue 3. Art. No.: CD01476. DOI: 10.1002/14651858.CD014756.pub2

Read the LSTM news story here.

The CIDG editorial base and the author team (Melissa Taylor, Nancy Medley, Susan van Wyk, and Sandy Oliver) are funded by UK aid from the UK government for the benefit of low- and middle-income countries (project number 300342-104). The views expressed do not necessarily reflect the UK government’s official policies.