What is active case finding?
Active case finding (ACF) involves health workers going out into communities to identify people with tuberculosis who otherwise might not have sought help in clinics (e.g. because they live too far from health facilities or cannot afford to get there). The aim of ACF is to find people who have tuberculosis and provide them with treatment, in order to reduce the spread of disease and improve the health of infected people.
What did we want to find out?
We aimed to understand the experiences and perspectives of people who had been involved in ACF, including people with tuberculosis, community members, and health workers.
What did we find?
We included 45 studies and sampled from 20 across a broad range of World Health Organization (WHO) regions (Africa, South-East Asia, Eastern Mediterranean, and the Americas). From these data, we drew the following five main conclusions.
• ACF improves access to diagnosis for many, but does little to help the poorest people.
ACF improves access to health services for people with worse health and fewer resources. However, programmes are not always sensitive to the challenges people have in their daily lives. Those who migrate for work or who live in remote areas also have little access to ACF.
• People are afraid of diagnosis and its impact.
Being targeted for screening is frightening. It exposes people to discrimination due to stigma, and people may also assume they have HIV. For this reason, some people may refuse to participate in diagnosis and treatment. In addition, people report feeling overwhelmed and afraid upon diagnosis, as they anticipate medicine side effects and the prospect of living with a serious illness.
• Screening is undermined by weak health infrastructure.
In many settings, lack of investment has resulted in poor services. As a result, people face repeated tests and clinic visits, wasted time, and difficult interactions with health workers. People with tuberculosis or other conditions who attend screening expect follow-up care, which they may or may not receive. Finally, community members, parents, and health workers often receive inadequate information, which can lead to harm for children.
• Health workers are an under-valued but important part of ACF.
ACF can feel difficult for health workers due to lack of support. They are also poorly protected against tuberculosis and fear that they or their families might become infected. Despite these obstacles, the care and support provided by health workers helps people feel able to manage their condition.
• Local leadership is necessary but not sufficient for ensuring appropriate programmes.
When people from the local community promote or conduct ACF, it increases support for the service. However, health workers need to balance professional authority with local knowledge and rapport.
How up to date is this evidence?
We searched for studies published before 22 June 2023.
Tuberculosis active case finding (ACF) and contact tracing bring a diagnostic service to people who may otherwise not receive it, such as those who are well or without symptoms and those who are sick but who have fewer resources and live further from health facilities. However, capturing these 'missing cases' may in itself be insufficient without appropriate health system strengthening to retain people in care. People who receive a tuberculosis diagnosis must contend with a complex and unsustainable cascade of care, and this affects their perception of ACF and their decision to engage with it.
Active case finding (ACF) refers to the systematic identification of people with tuberculosis in communities and amongst populations who do not present to health facilities, through approaches such as door-to-door screening or contact tracing. ACF may improve access to tuberculosis diagnosis and treatment for the poor and for people remote from diagnostic and treatment facilities. As a result, ACF may also reduce onward transmission. However, there is a need to understand how these programmes are experienced by communities in order to design appropriate services.
To synthesize community views on tuberculosis active case finding (ACF) programmes in low- and middle-income countries.
We searched MEDLINE, Embase, and eight other databases up to 22 June 2023, together with reference checking, citation searching, and contact with study authors to identify additional studies. We did not include grey literature.
This review synthesized qualitative research and mixed-methods studies with separate qualitative data. Eligible studies explored community experiences, perceptions, or attitudes towards ACF programmes for tuberculosis in any endemic low- or middle-income country, with no time restrictions.
Due to the large volume of studies identified, we chose to sample studies that had 'thick' description and that investigated key subgroups of children and refugees. We followed standard Cochrane methods for study description and appraisal of methodological limitations. We conducted thematic synthesis and developed codes inductively using ATLAS.ti software. We examined codes for underlying ideas, connections, and interpretations and, from this, generated analytical themes. We assessed the confidence in the findings using the GRADE‐CERQual approach, and produced a conceptual model to display how the different findings interact.
We included 45 studies in this synthesis, and sampled 20. The studies covered a broad range of World Health Organization (WHO) regions (Africa, South-East Asia, Eastern Mediterranean, and the Americas) and explored the views and experiences of community members, community health workers, and clinical staff in low- and middle-income countries endemic for tuberculosis. The following five themes emerged.
• ACF improves access to diagnosis for many, but does little to help communities on the edge.
Tuberculosis ACF and contact tracing improve access to health services for people with worse health and fewer resources (High confidence). ACF helps to find this population, exposed to deprived living conditions, but is not sensitive to additional dimensions of their plight (High confidence) and out-of-pocket costs necessary to continue care (High confidence). Finally, migration and difficult geography further reduce communities' access to ACF (High confidence).
• People are afraid of diagnosis and its impact.
Some community members find screening frightening. It exposes them to discrimination along distinct pathways (isolation from their families and wider community, lost employment and housing). HIV stigma compounds tuberculosis stigma and heightens vulnerability to discrimination along these same pathways (High confidence). Consequently, community members may refuse to participate in screening, contact tracing, and treatment (High confidence). In addition, people with tuberculosis reported their emotional turmoil upon diagnosis, as they anticipated intense treatment regimens and the prospect of living with a serious illness (High confidence).
• Screening is undermined by weak health infrastructure.
In many settings, a lack of resources results in weak services in competition with other disease control programmes (Moderate confidence). In this context of low investment, people face repeated tests and clinic visits, wasted time, and fraught social interaction with health providers (Moderate confidence). ACF can create expectations for follow-up health care that it cannot deliver (High confidence). Finally, community education improves awareness of tuberculosis in some settings, but lack of full information impacts community members, parents, and health workers, and sometimes leads to harm for children (High confidence).
• Health workers are an undervalued but important part of ACF.
ACF can feel difficult for health workers in the context of a poorly resourced health system and with people who may not wish to be identified. In addition, the evidence suggests health workers are poorly protected against tuberculosis and fear they or their families might become infected (Moderate confidence). However, they appear to be central to programme success, as the humanity they offer often acts as a driving force for retaining people with tuberculosis in care (Moderate confidence).
• Local leadership is necessary but not sufficient for ensuring appropriate programmes.
Local leadership creates an intrinsic motivation for communities to value health services (High confidence). However, local leadership cannot guarantee the success of ACF and contact tracing programmes. It is important to balance professional authority with local knowledge and rapport (High confidence).