Public awareness, knowledge and attitudes toward thalassemia and its screening in five high-prevalence countries: a cross-sectional study based on an online survey

BACKGROUND: Thalassemia is a significant public health issue in many high-prevalence countries. Despite progress in thalassemia management, limited public awareness and engagement continue to hinder early detection and prevention efforts. This study aimed to assess public awareness, knowledge, and attitudes toward thalassemia and its screening in five high-prevalence countries: Azerbaijan, Indonesia, Kuwait, Saudi Arabia, and Thailand. METHODS: A cross-sectional online survey was conducted among females aged 18-50 residing in the selected countries. The study required each country to include at least 300 participants, with sample size estimated via a simplified normal approximation method. The 31-item questionnaire covered personal information, knowledge and attitude scales, and factors influencing thalassemia screening. Statistical analyses used chi-square test, student t-test, and logistic regression to assess associations, with results expressed as odds-ratios and 95% confidence intervals, complemented by concentration curves to evaluate knowledge distribution across educational levels. RESULTS: A total of 1,539 participants were included in the analysis. Awareness of thalassemia was relatively high (85.06%), though Saudi Arabia showed significantly lower awareness compared to other countries (P < 0.05). The survey revealed significant gaps in public understanding of thalassemia: only 20.08% of respondents correctly identified it as a genetic disorder, and an even smaller proportion-merely 5.39%-were aware that thalassemia is a curable condition. Disparities in knowledge were evident, with higher education levels correlating with better understanding, particularly in Azerbaijan (concentration index: 0.092, P < 0.001). Older participants, those with higher education, and individuals who were married or had children demonstrated greater knowledge. Positive attitudes were associated with higher education, personal familiarity with thalassemia, and better knowledge. CONCLUSION: While public awareness of thalassemia is relatively high, knowledge levels remain poor, highlighting the need for targeted educational interventions and awareness campaigns to address knowledge gaps and improve attitudes toward thalassemia screening in diverse populations.