Estimating the costs of delayed Celiac disease diagnosis

Celiac disease (CD) is a chronic immune-mediated disorder that can lead to significant health complications and economic burdens resulting from delayed diagnosis. This study aims to estimate the potential costs associated with delayed CD diagnosis in Iran. A cross-sectional survey was conducted with 375 CD patients across various provinces in Iran from March to July 2024. Participants provided self-reported data on demographics, medical history, diagnostic procedures, symptom onset, healthcare visits, and associated expenses. Two cost estimation methods were used: (1) modeled costs based on healthcare utilization frequencies multiplied by 2024 unit costs (Iranian Ministry of Health tariffs and diagnostic center data), and (2) self-reported costs including direct medical expenses and indirect costs like lost productivity. Additionally, linear regression models were used to identify factors associated with higher total costs. The median age of participants was 30 years, with the majority being women (71.20%) and single (52.27%). The median diagnostic delay of CD was approximately 10 years. Patients reported an average of 7.34 visits to general practitioners and 4.61 to specialists prior to diagnosis. The total self-reported economic burden reached an average of 45.87 million Toman (~ 573 USD), with a median of 19.75 million Toman (~ 247 USD). Modeled cost estimates based on healthcare utilization revealed total costs averaging 67.59 million Toman (~ 849 USD), with a median of 37.71 million Toman (~ 474 USD). Hospitalizations triggered by complications related to delayed diagnosis occurred in 24.27% of participants. Geographically, the proportion of CD cases was highest in Razavi Khorasan, Kerman, and Gilan, with a notable increase in diagnoses from 1984 to 2024. Subgroup analysis showed that married participants, those with higher education, and those who were self-employed or employed reported higher median costs. Regression analysis further confirmed that being married and having longer adherence to a gluten-free diet (GFD) were independently associated with increased total costs. The prolonged diagnostic delay for CD in Iran leads to substantial healthcare costs and is associated with significant morbidity. These costs are disproportionately higher among certain subgroups, including married individuals and those with longer adherence to a GFD. To address this, implementing widespread screening, improving healthcare provider education, and increasing public awareness are essential strategies.