Understanding patient pathways and care delays in India: implications for early leprosy detection

Dermatology clinic in a public tertiary hospital in Telangana, India.

Among newly diagnosed leprosy patients (2023-2025), to describe patient care pathways, quantify patient and health system delays and compare across private and public sectors, and explore patient and provider perceptions about care delays.

Mixed-methods study with cross-sectional quantitative (questionnaire-based interviews) and descriptive qualitative components (in-depth interviews).

Of 90 eligible, 46 (51%) were recruited. The median (inter-quartile range [IQR]) number of providers consulted was 3 (2-3). Three fourths first sought care from a public provider. Median (IQR) overall delay was 108 days (40-255), patient delay of 73 days (16-158) (symptom onset to first health care contact) and health system delay of 14.5 days (11-39) (first health care contact to treatment initiation). Patients initially approaching private sector had longer median health system delay than those seeking public sector (28 vs. 13 days, P = 0.02). Poor symptom awareness, symptom neglect, and stigma contributed to patient delay, while poor provider capacity and long-distance travel contributed to health system delays.

Delays in leprosy care are largely driven by patient delay and missed diagnostic opportunities, particularly in the private sector. Strengthening community awareness and private sector engagement is essential for early detection.