Experiences and understanding of diagnosis and treatment among drug-resistant extrapulmonary tuberculosis patients: A qualitative study from Central India

Extrapulmonary tuberculosis (EPTB) accounts for 15–20% of tuberculosis (TB) cases in immunocompetent individuals and over 50% in people living with Human immunodeficiency virus (HIV). Drug-resistant EPTB presents unique diagnostic and treatment challenges, yet patient experiences remain poorly understood. This study explores how patients with drug-resistant-EPTB perceive and navigate disease acquisition, diagnosis, and treatment within the Indian context. A qualitative study was conducted between January 2022 and July 2024 using in-depth individual interviews with 18 patients diagnosed with drug-resistant-EPTB at a tertiary care centre in Central India. Participants were purposively selected to ensure variation in age, gender, and disease site. Interviews were audio-recorded, transcribed verbatim, and analysed thematically following a structured coding framework. Reporting adhered to COREQ guidelines. Patient experiences were characterized by a “pathway of uncertainty” spanning disease understanding, diagnosis, and treatment. Three major themes emerged. First, limited understanding of EPTB and drug resistance, with misconceptions regarding disease presentation and confusion about the origins of drug resistance, including limited awareness of primary transmission. Second, fragmented diagnostic pathways, marked by delayed diagnosis, multiple healthcare encounters, and reliance on informal care, often compounded by non-specific clinical presentations. Third, uncertainty during treatment, driven by adverse drug effects, lack of clear monitoring indicators, and inadequate communication. These challenges were accompanied by significant socioeconomic and psychosocial impacts, including financial strain, stigma, and gendered vulnerabilities, with some effects persisting beyond treatment. Drug-resistant -EPTB patient experiences reflect interconnected challenges that extend beyond clinical management, forming a continuum of uncertainty across the care pathway. Addressing these requires improved patient-centered communication, strengthened diagnostic pathways, and greater attention to the specific needs of drug-resistant -EPTB within TB control programmes.