Introduction: Pretreatment loss to follow-up (PTLFU)--dropout of patients after diagnosis but before registration in treatment--is a major gap in TB care delivery in India and globally. Patient and healthcare worker (HCW) perspectives are critical for developing interventions to address this problem.
Methods: We prospectively tracked newly diagnosed smear-positive TB patients from 22 TB diagnostic centers in Chennai, one of the largest cities in India. Patients who did not start therapy within 14 days, or who died or were lost to follow-up before official registration in treatment, were classified as PTLFU cases. We conducted qualitative interviews with all trackable PTLFU patients, or family members of patients who had died. We conducted focus group discussions (FGDs) with three types of HCWs involved in TB care. Interview and FGD recordings were transcribed, coded, and analyzed with the support of Dedoose 8.0.35 software to identify key themes. We created categories into which these themes clustered, identified relationships among thematic categories, and assembled findings into a broader explanatory model for PTLFU.
Results: We conducted six FGDs comprising 53 HCWs and 33 individual patient or family member interviews. Themes clustered into five categories. Examining relationships among these categories revealed two pathways leading to PTLFU as part of a broader explanatory model. In the first pathway, administrative and organizational health system barriers--including the complexity of navigating the system, healthcare worker absenteeism, and infrastructure failures--resulted in patients feeling frustration or resignation, leading to disengagement from care. Health system barriers experienced by patients were in turn shaped by constraints that made it difficult for HCWs to do their jobs effectively. In the second pathway, negative or judgmental HCW attitudes and behaviors towards patients contributed to patient distrust of the health system, resulting in refusal of further care.
Conclusion: Health system barriers contribute substantially to PTLFU directly and by amplifying patient-related challenges to engaging in care. Interventions should focus on removing administrative hurdles patients face in the health system, improving the quality of the HCW-patient interaction, and alleviating constraints HCWs face in being able to provide optimal patient-centered care.