Prevalence and drivers of loss to follow-up among adolescents with tuberculosis at Mulago National Referral Hospital

Abstract

Background: Adolescents with tuberculosis (TB) face unique obstacles across individual, interpersonal, health system, community, and policy levels, increasing their risk of loss to follow-up. The World Health Organisation classifies TB cases as pediatric (0–14 years) or adult (15+ years), obscuring the distinct profile of adolescents (10–19 years). Despite therapeutic advances, adolescents have loss to follow-up (LTFU) rates twice those of adults, reflecting unmet care needs. Objective: To determine the prevalence and drivers of LTFU among adolescents with TB at Mulago National Referral Hospital. Methods: A sequential mixed-methods study was conducted. Phase 1 involved retrospective review of TB registers (July 2023 – June 2025) to calculate LTFU prevalence. Phase 2 comprised in-depth interviews with purposively sampled adolescents who had been lost to follow-up, stratified by age, sex, and residence, plus key informant interviews with healthcare providers and community health workers. Quantitative data was analysed using STATA, and the qualitative data was analysed thematically using the Socio-Ecological Model. Results: Among 123 adolescents, the prevalence of LTFU was 9.8% (12/123). Most participants (75.6%) completed treatment, while 9.8% were lost to follow-up, 10.6% transferred out, and 4.1% died. The median duration in care before LTFU was 172 days (IQR: 60–182.5 days). Qualitative findings revealed multi-level drivers: individual (transport and distance barriers, treatment burden, side effects, school commitments); interpersonal (stigma, peer influence, lack of family support); health system (limited provider support, strict clinic appointments, drug stockouts); community (weak facility–community linkage, cultural and religious beliefs); and policy (reduced donor funding for community programs). Conclusion: One in ten adolescents with TB at Mulago Hospital was lost to follow-up. Drivers of LTFU span multiple levels, with transport costs, side effects, stigma, and health system inflexibility being prominent. Multi-level interventions, including decentralising TB services to lower-level health facilities, expanding national TB programs to include all adolescents, adolescent-friendly clinic models, and targeted social media campaigns, are urgently needed to improve treatment completion and align with the 2030 WHO End TB Strategy.