Pre-diagnostic loss to follow-up in an active case-finding TB program: a mixed-methods study from rural Bihar, India

Abstract

Background Despite active case-finding (ACF) identifying more presumptive and confirmed TB cases, high pre-diagnostic loss to follow-up (PDLFU) among presumptive TB cases referred for diagnostic test remains a concern. We aimed to quantify the PDLFU, and identify the barriers and enablers in undergoing a diagnostic evaluation in an ACF program implemented in 1.02 million rural population in the Samastipur district of Bihar, India. Methods During their routine work, Accredited Social Health Activists (ASHA, a community health worker or CHW), informal providers, and community laypersons identified people at risk of TB, and referred them to the program. A field coordinator (FC) screened them for TB symptoms at the patient's home. The identified presumptive TB cases were accompanied by the CHW to a designated government facility for diagnostics. Those with a confirmed TB diagnosis were put on treatment by the CHW and followed-up till treatment completion. All services were provided free of cost and patients were supported throughout the care pathway, including a transport allowance. We analyzed programmatically collected data, conducted in-depth interviews with patients, and focus group discussions with the CHWs and FCs in an explanatory mixed-methods design. Results A total of 11146 presumptive TB cases were identified from January 2018 to December 2018, out of which 4912 (44.1%) underwent a diagnostic evaluation. The key enablers were CHW accompaniment and support in addition to the free TB services in the public sector. The major barriers identified were transport challenges, deficient family and health provider support, and poor services in the public system. Conclusion If we are to find missing cases, the health system needs urgent reform, and diagnostic services need to be patient-centric. A strong patient support system engaging all stakeholders and involvement of CHWs in routine TB care is an effective solution.