Prediagnostic loss to follow-up in an active case finding tuberculosis programme: a mixed-methods study from rural Bihar, India

OBJECTIVE: To quantify the prediagnostic loss to follow-up (PDLFU) in an active case finding tuberculosis (TB) programme and identify the barriers and enablers in undergoing diagnostic evaluation. DESIGN: Explanatory mixed-methods design. SETTING: A rural population of 1.02 million in the Samastipur district of Bihar, India. PARTICIPANTS: Based on their knowledge of health status of families, community health workers or CHWs (called accredited social health activist or locally) and informal providers referred people to the programme. The field coordinators (FCs) in the programme screened the referrals for TB symptoms to identify presumptive TB cases. CHWs accompanied the presumptive TB patients to free diagnostic evaluation, and a transport allowance was given to the patients. Thereafter, CHWs initiated and supported the treatment of confirmed cases. We included 13 395 community referrals received between January and December 2018. To understand the reasons of the PDLFU, we conducted in-depth interviews with patients who were evaluated (n=3), patients who were not evaluated (n=4) and focus group discussions with the CHWs (n=2) and FCs (n=1). OUTCOME MEASURES: Proportion and characteristics of PDLFU and association of demographic and symptom characteristics with diagnostic evaluation. RESULTS: A total of 11 146 presumptive TB cases were identified between January and December 2018, out of which 4912 (44.1%) underwent diagnostic evaluation. In addition to the free TB services in the public sector, the key enablers were CHW accompaniment and support. The major barriers identified were misinformation and stigma, deficient family and health provider support, transport challenges and poor services in the public health system. CONCLUSION: Finding the missing cases will require patient-centric diagnostic services and urgent reform in the health system. A community-oriented intervention focusing on stigma, misinformation and patient support will be critical to its success.