Subjective Valuation of Screening for Spinal Muscular Atrophy ‎and Analysis of its Influencing Factors:Evidence from Iran

Spinal muscular atrophy is an inherited neurodegenerative disorder that typically leads to severe physical disability. The present study aimed to determine the subjective evaluation of this disorder screening and analyze its influencing factors in Iran.‎    

A cross-sectional study was performed using data from the second survey of women either pregnant or planning to become pregnant in Tehran, the capital of Iran, in 2022. The dependent variable was the willingness to pay for this disease screening test. The independent variables included sociodemographic, economic, and health characteristics, the history of this disease or other diseases of the person and family, and knowledge about this disease in the included population. Logistic regression was utilized to identify independent variables associated with the dependent variable, and the results were reported as unadjusted and adjusted odds ratios and P values with 95% CIs. A questionnaire was used as a research tool, and STATA 17 software was used for data analysis. The monetary value of spinal muscular atrophy (SMA) screening was calculated by estimating willingness to pay using the congenital valuation method.   

In total, 578 women were included. About 64.85% of respondents had a willingness to pay for SMA screening as the dependent variable, with a mean of $526. University education (P = 0.009) and pregnancy experience (P = 0.021) were associated with the dependent variable.  

Iranian women expressed their willingness to undergo screening tests, but due to financial constraints, they expected the government and nongovernmental organizations to bear most of the cost.