SUCCESS STORY - URC-CHS · SUCCESS STORY “You can only find us if you speak our language”: Using patient-led contact tracing to find more tuberculosis cases in a closed community

SUCCESS STORY“You can only find us if you speak our language”:Using patient-led contact tracing to find more tuberculosis cases in a closed community

“You can only find us if you speak our language.”Understanding community perspective is critical to finding and diagnosing multidrug-resistant tuberculosis (MDR-TB) in closed communities. Closed communities such as Kisenyi, one of the most highly populated slums in Kampala City, intentionally limit access and links with outsiders. Only members from the same community can connect health workers and volunteers to their peers for any health-related intervention, including TB screening. As a result, in these settings, TB control is a big challenge.

KI, a resident of Kisenyi, was recently diagnosed with rifampicin-resistant tuberculosis (RR-TB), a type of TB which is difficult to treat. KI had been out of touch with his family for several years and no one in his family knew his whereabouts. However, when he began to feel ill and weak, he sought out his sister who is a health professional. She immediately took him to Mengo Hospital, a private not-for profit hospital in Kampala, to be tested for TB. KI’s sister noted that her brother became a troubled young man that suffered homelessness and challenges that come with living in a lawless environment. KI was diagnosed with RR-TB and was immediately transferred and admitted to the MDR-TB ward at Mulago National Referral Hospital (NRH), the nearest drug-resistant TB (DR-TB) treatment facility.

March 2020This success story is made possible by the generous support of the American People through the United States Agency for International Development (USAID). The contents of this story are the responsibility of URC and do not necessarily reflect the views of USAID or the United States Government.

A community linkage facilitator talking to KI’s contacts

Once admitted as a DR-TB patient, Mulago NRH health workers needed to conduct contact tracing and assess/evaluate KI’s family and close contacts for active TB. Although a standard procedure in the management of DR-TB, in this case, contact tracing for KI would prove to be a little more complex than usual. His community is considered impenetrable by “external forces.” In his hideout in Kisenyi, he was the only one who could lead a health worker to his close friends and household members — his contacts. After learning how TB is spread and prevented, KI volunteered to take the health workers and community linkage facilitators from Mulago NRH to his hideout in order to save his contacts. He also had telephone contact information for some of his friends to facilitate appointments for TB assessment.

The atmosphere in Kisenyi was tense. The Mulago NRH team were anxious entering the slum as many of the residents were active drug users who found the team’s presence to be an encroachment on their personal space. KI was instrumental in explaining to the residents and close contacts that he had been unwell, and the health workers

Figure 2: Results of the patient-led contact tracing cascade (KI’s close contacts)

Figure 1: National Intensified TB Case Finding Guide for TB screening

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had taken good care of him. On arrival at Kisenyi, the team met with the area local chairperson and explained the reasons for coming back with KI to the community. KI gathered his contacts and told them why the team was there, urging all of them to take part in the screening. KI kept checking for the presence of all his contacts and whoever was missing was called from a dark room where they were hiding. KI was particularly concerned for his girlfriend whom he suspected was the source of his ailment because he was educated by the Mulago NRH staff about the signs and symptoms of TB and how it spreads. His suspicion was validated given that she was later diagnosed with TB.

ResultsAs a result of the patient-led contact tracing, 40 of KI’s close friends were screened for TB using both the intensified TB case finding guide (shown in Figure 1) and symptom screening. Given the poor ventilation and congestion in the living environment, all contacts with a current cough were presumed to have TB. Six of the 30 presumed patients were diagnosed with TB using the GeneXpert machine, which translates to a TB yield of 15%. This yield is five times higher than the 3% yield usually obtained through health care worker-led contact tracing. The complete screening cascade for the 40 close contacts is shown in Figure 2.

Furthermore, because of KI’s engagement in reaching his community, health workers were able to organise and conduct general TB screening in this community. KI allayed the fears and suspicions of the community by speaking to them and mobilising them for the screening activity. The team screened another 413 people of which 152 were presumed to have TB. Five of the 152 (3.2%) were diagnosed with TB using the GeneXpert machine.

ConclusionUnless a community member is engaged in health interventions, penetration and acceptance of health worker teams into closed communities is challenging. Patient-led contact tracing, as demonstrated by KI, can lead to

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a better TB yield than the usual health care worker-led approach in a closed community as the contacts are easily identified by the index case, who is one of their own. This novel approach enables health workers to have access to contacts of TB patients they would otherwise miss. The contacts who have been diagnosed with TB should then be engaged to find more missing TB cases in these closed communities as they are able to speak to and mobilise contacts and the wider community to access health interventions. Defeat TB will replicate this contact tracing approach to increase TB case finding in other closed communities.