Abstract

Background: TB and aspects of its treatment are known to impair health-related quality of life, but data are lacking on how pulmonary TB is experienced from the standpoint of affected individuals.

Methods: We conducted a review of published literature and online content with the goal of conceptualising the personal experience of TB. Using social media sources drawn from the years 2020-2022, concepts from the literature review were updated with the perspectives of people with TB and caregivers from multiple countries across different World Bank income categories.

Results: The literature review identified 110 published articles and 91 stories of people with TB, enabling the generation of a conceptual model representing symptoms, disease impacts, and diagnostic and treatment challenges. Concepts of interest varied by country income level. The social media analysis captured 657 posts across 15 countries; the impacts described included physical (48%), emotional (28%), economic (18%), social (13%), caregiver (10%), and cultural (3%) impacts. Diagnosis was frequently associated with delays, access challenges, and confusion with COVID-19.

Conclusion: People affected by TB worldwide report impacts on multiple life dimensions, but the types of impact vary by geography, income, and culture. Additional research sensitive to local experience is needed.