“Better to Die Than Take These Medicines”: A Community-Based Qualitative Study on the Determinants of Treatment Loss-to-Follow-Up in Tuberculosis Patients in District Faridabad, Haryana, India

Introduction India is the biggest contributor to the global incidence of tuberculosis (TB). A major reason behind the persistently high incidence of TB in India is treatment loss-to-follow-up (LTFU). The consequences of LTFU include continuous transmission to uninfected individuals, drug resistance, and a higher rate of death in incompletely treated patients. It is a significant hurdle to making India ‘TB-Free’ by 2025. Hence, we conducted a community-based qualitative study to understand the determinants of treatment of LTFU in TB patients in the Faridabad district of Haryana, India. Methodology We enrolled TB patients who had completed treatment as well as those who had been LTFU. We also enrolled National Tuberculosis Elimination Programme (NTEP) functionaries, healthcare providers, family members, and community members. In-depth interviews (IDIs) and focus group discussions (FGDs) were conducted to understand stakeholders’ perceptions of reasons for LTFU. The grounded theory approach was used with inductive analysis. Data were triangulated from stakeholders’ interviews. Themes and sub-themes were identified. A Health Belief Model for TB treatment completion was developed. Results Fifty-eight IDIs and four FGDs were conducted between May-June 2018. The major themes influencing the treatment of LTFU which emerged from the analyses were - the role of external motivators, regular use of alcohol, lack of/or inappropriate knowledge related to treatment, lack of family support, and side effects of anti-tubercular drugs, and a poor experience with the health system. Stigma was not found to be a major determinant - in the few cases that it affected treatment, it spurred treatment completion rather than LTFU. “I completed the course with great difficulty. Then they started it again! […] I said-Sorry, sir, I can’t go through this again. It’s better to die once than to die a thousand deaths.” - Fifty-one-year-old male patient who was lost-to-follow-up on re-treatment. Discussion This study was a comprehensive multi-stakeholder qualitative undertaking to identify the determinants of LTFU. Our qualitative approach explained the associations between LTFU and certain factors (e.g.: alcohol use, side effects, etc.) found in previous quantitative studies. The strength of this study was that we ensured participation by patients as well as all district-level stakeholders from the national health programme, which no previous qualitative study on the treatment LTFU in India had achieved. The entire qualitative analysis was done manually and in Hindi (the language in which interviews were conducted). Hence, no data were lost in translation. The limitation was that its findings were specific to the study area and study population, as is the case with all qualitative studies. Conclusion All healthcare providers should be sensitised to the determinants of treatment LTFU, so that they can pay special attention to at-risk patients and take appropriate steps to prevent LTFU. For instance, patients with a pattern of regular alcohol use should be counselled and may be referred to deaddiction centres, with the continuum of care maintained. The journey from tuberculosis diagnosis to treatment completion is often extremely traumatic for the patient. The onus to successfully complete treatment lies not with the patient alone, but with the health system as well.