Delays in tuberculosis diagnosis and treatment in India: A patient journey analysis from Mumbai and Patna

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Abstract

ABSTRACT Background Tuberculosis (TB) patient services in India are often fragmented, undermining timely access to timely diagnosis and treatment. Understanding patient journeys is critical to strengthening TB care delivery and achieving elimination goals. Methods We conducted a cross-sectional study of 400 TB patients diagnosed between 2020– 2022 in two major Indian cities: Mumbai (n=200) and Patna (n=200). Using structured interviews, we examined health-seeking behavior, delays to diagnosis and treatment, the number and type of healthcare encounters, and out-of-pocket costs. Results Patients predominantly initiated care in the private sector (91% in Mumbai; 85% in Patna), often with pharmacies or private clinics. Care pathways were fragmented, requiring multiple provider visits before diagnosis. The median total delay from symptom onset to treatment initiation was 35 days (IQR: 13–81) in Patna and 26 days (IQR: 12–59) in Mumbai. Provider delays accounted for nearly 19 days in both settings. Patients made a median of 3 healthcare visits pre-diagnosis, with 23% experiencing ≥6 encounters. The financial burden of TB care was substantial, particularly in Mumbai, where consultation and diagnostic costs were markedly higher than in Patna. Longer delays and higher numbers of encounters were associated with being male, unemployed, having larger household size, and hesitation to seek care during the study period. Conclusion TB patient pathways in urban India pandemic were prolonged, costly, and fragmented — especially within the private sector during the COVID-19. Strengthening public-private integration, improving early diagnosis strategies, and protecting patients from financial hardship are essential priorities to accelerate TB elimination and strengthen health system resilience against future disruptions.
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Abstract

Background Tuberculosis (TB) patient services in India are often fragmented, undermining timely access to timely diagnosis and treatment. Understanding patient journeys is critical to strengthening TB care delivery and achieving elimination goals.

Methods

We conducted a cross-sectional study of 400 TB patients diagnosed between 2020– 2022 in two major Indian cities: Mumbai (n=200) and Patna (n=200). Using structured interviews, we examined health-seeking behavior, delays to diagnosis and treatment, the number and type of healthcare encounters, and out-of-pocket costs.

Results

Patients predominantly initiated care in the private sector (91% in Mumbai; 85% in Patna), often with pharmacies or private clinics. Care pathways were fragmented, requiring multiple provider visits before diagnosis. The median total delay from symptom onset to treatment initiation was 35 days (IQR: 13–81) in Patna and 26 days (IQR: 12–59) in Mumbai. Provider delays accounted for nearly 19 days in both settings. Patients made a median of 3 healthcare visits pre-diagnosis, with 23% experiencing ≥6 encounters. The financial burden of TB care was substantial, particularly in Mumbai, where consultation and diagnostic costs were markedly higher than in Patna. Longer delays and higher numbers of encounters were associated with being male, unemployed, having larger household size, and hesitation to seek care during the study period.

Conclusion

TB patient pathways in urban India pandemic were prolonged, costly, and fragmented — especially within the private sector during the COVID-19. Strengthening public-private integration, improving early diagnosis strategies, and protecting patients from financial hardship are essential priorities to accelerate TB elimination and strengthen health system resilience against future disruptions. Competing Interest Statement The authors have declared no competing interest. Funding Statement This study was funded by the Bill and Melinda Gates Foundation (Grant #: INV-022420; PIs: Madhukar Pai, Jishnu Das). The funders had no role in the study design, data collection and analysis, the decision to publish, or the preparation of the manuscript. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: McGill University Research Ethics Board (Covid BMGF / 2021-7197), the Georgetown-Medstar IRB (STUDY00003422), and the Institute for Social and Economic Research on Development and Democracy (ISERDD) gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability All data produced in the present study are available upon reasonable request to the authors.

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