Financial hardship of tuberculosis patients registered under National Tuberculosis Elimination Programme (NTEP) in rural India: A longitudinal study

Abstract

BackgroundIndia shares a significant proportion of the Tuberculosis (TB) burden of the world. TB diagnosis, treatment, and success are complicated by the chronic nature of the disease as well as additional stressors including financial, psychological, and social hardships, adverse events associated with management, and poor compliance towards anti-tuberculosis medications. MethodsThis is a longitudinal study conducted in the Tuberculosis Units (TUs) of rural field practice areas of the Department of Community Medicine and Family Medicine in a tertiary care hospital in Odisha. 168 diagnosed TB patients from the TUs were enrolled after registration in NTEP and were followed up every month for 6 months or treatment completion. TB patient's cost estimate tool was used to collect data regarding the cost incurred by the patients before and during the diagnosis as well as in the post-diagnosis or treatment period. Results and conclusionOut-of-pocket expenditure was calculated as direct, indirect, and total cost in the pre and post-diagnostic phases of the disease. The median pre and post-diagnosis direct, indirect and total costs were ₹ 12,805, ₹ 16,960 and ₹ 31,192, respectively, with almost 62 % of participants spending more than 20 % of their annual income. In this study, 41 % of participants had to stop working for more than 60 days, and 53.1 % faced distress financing due to the disease. Through this study, we found that more than half of rural TB patients still visit private health facilities, and 20 % start anti-TB drugs by purchasing them from private pharmacies, which incur substantial out-of-pocket expenditure. Most participants faced catastrophic costs associated with hospitalisation, lower family income, and a delay in disease diagnosis.