Patient pathways and delays to diagnosis and treatment of tuberculosis in an urban setting in Indonesia

BACKGROUND: Understanding patient pathways can help align patient preferences and tuberculosis (TB) related services. We investigated patient pathways, and diagnostic and treatment delays among TB patients in Indonesia, which has one of the highest proportions of non-notified TB cases globally. METHODS: We conducted a study of TB patients recruited from Community Health Centers (CHCs), public and private hospitals, and private practitioners from 2017 to 2019 in Bandung City, regarding general characteristics and symptoms, and health-seeking, diagnostic and treatment pathways. FINDINGS: We recruited 414 TB patients: 138 (33%) in CHCs, 210 (51%) in hospitals, 66 (20%) in private practitioners. Most patients (74·6%) first sought care at an informal or private provider and experienced a complex pathway visiting both public and private providers to obtain a diagnosis. The median number of health provider visits pre-diagnosis was 6 (IQR 4–8). From start of symptoms, it took a median 30 days (IQR 14–61) to present to a health provider, 62 days (IQR 35–113) to reach a TB diagnosis, and 65 days (IQR 37–119) to start treatment. Patient delay was longer among male, lowly-educated and uninsured individuals. There were longer diagnostic delays among uninsured individuals, those who initially visited private providers, and those with multiple visits prior to diagnosis. Longer treatment delays were found in those with multiple pre-diagnosis visits or diagnosed by private practitioners. INTERPRETATION: Patient pathways in Indonesia are complex, involving the public and private sector, with multiple visits and long delays, especially to diagnosis. A widely available accurate diagnostic test for TB could have a dramatic effect on reducing delays, onward transmission and mortality. FUNDING: This project was funded by the Partnership for Enhanced Engagement in Research (PEER) grant under Prime Agreement Number AID-OAA-A-11–00,012 by National Academy of Sciences (NAS); the United States Agency for International Development (USAID); University of Otago, New Zealand, and the Indonesian Endowment Fund for Education (LPDP).