HEALTH SYSTEM RELATED BARRIERS TO MULTIDRUG-RESISTANT TUBERCULOSIS (MDR-TB) CARE IN AN INDIAN SETTING: FROM PATIENTS’ PERSPECTIVE

Abstract

Intro: Health policies and health system-related barriers sometimes put individuals and populations at risk. We aimed at identifying and describing some of these barriers that were evident from the analysis of patient narratives as they navigated care for multidrug-resistant tuberculosis (MDR-TB). Methods: We conducted a cross-sectional mixed-methods study on pathways to MDR-TB care. We interviewed patients aged 15 years or older, registered and treated under the Revised National Tuberculosis Control Program (RNTCP) in Pune city of India. We enrolled a sample of 128 (56 men and 72 women) cases with MDR-TB whom we could reach and who consented for in-depth interviews. Here we present mainly the qualitative part of the study. Findings: Results: We identified barriers such as delays in referral for the diagnosis of MDR-TB, a lack of counselling for patients, unwillingness for referral to the RNTCP and unwarranted high out of pocket expenditure on treatment in the private sector. In the RNTCP, main barriers were providers’ disregard towards patients’ symptoms or concerns, non-courteous behavior/stigma, unclean hospital environment, unwilling contact with other drug resistant TB cases in the hospital rooms and staff's poor technical skills (e.g. unsafe administration of an injectable). Conclusion: The patient centered care for MDR-TB requires interactive education for the private sector, efforts for establishing mutually beneficial public-private collaboration, improvement in RNTCP's (now referred as National TB Elimination Program or NTEP) reach to the community, building trust among patients through activities like maintaining clean hospital environment, patients’ education and counseling and building staff's technical skills.