From symptoms to diagnosis: investigation of care-seeking behaviors and pre-diagnostic costs for tuberculosis in Iran

Abstract Background In Iran, despite free tuberculosis (TB) diagnostic tests and treatments, patients face significant pre-diagnosis costs, impeding the End TB Strategy. This study explores care-seeking patterns and estimates direct and indirect expenses incurred by TB patients before diagnosis. Methods The study included newly diagnosed pulmonary TB cases in adults (≥ 18 years) in Tehran, recorded in the National Tuberculosis Patient Registration System from July 2022 to July 2023. Data were collected via telephone interviews using a WHO-based questionnaire by TB coordinators from three medical universities (Tehran, Shahid Beheshti, Iran). Costs in Iranian Rials (IRR) were converted to USD (1 USD = 282,435 IRR, January 2023) and international dollars (Int) using the 2022–2023 Purchasing Power Parity (PPP) rate (76,195IRR/Int). A generalized linear model with gamma distribution identified cost predictors. Results The study included 166 of 212 eligible TB patients (mean age: 61 years, SD = 19.82; 57.2% male, 73.4% literate, 59.6% married, 91.6% in manual/skilled labor, 30.7% from eastern Tehran). Patients delayed care-seeking by a median of 14 days (IQR: 6–40); 5.4% tried self-treatment, Iranian/Islamic medicine, 52.4% visited private providers, and 42.2% used public facilities. Diagnosis took a median of 57 days (IQR: 25–121), fastest by general practitioners/specialists (31 days) and slowest by private hospitals/clinics (63 days). Median pre-diagnostic costs were 148,660,000 IRR (IQR: 52,615,000–329,805,000), equivalent to US$526 or Int$1,951 PPP-adjusted, comprising 48.8% medical, 10.2% non-medical, and 41% indirect costs. Higher costs were associated with private hospital diagnoses (61% increase, p = 0.006), multiple hospitalizations (3.56-fold, p = 0.006), and older patients with comorbidities (35–65 years: 5.04-fold, p = 0.001; >65 years: 4.94-fold, p = 0.001). Conclusion This study highlights the significant delays and financial burden that patients face before being diagnosed with TB. These costs are primarily attributed to TB diagnoses in private hospitals and clinics, multiple hospital admissions, and older age with comorbidities. Strengthening the referral system, building trust in public healthcare, raising awareness of TB symptoms, and ensuring free diagnosis and treatment in public health centers are crucial steps in addressing these challenges.