High carrier prevalence with poor knowledge of thalassaemia among the university students from indigenous communities in Bangladesh

Abstract Background Thalassemia is an inherited life-threatening but preventable haemoglobin disorder. South Asian countries including Bangladesh are the hotspots of world’s thalassemia belt. Indigenous communities are underprivileged and vulnerable to genetic disorders including thalassaemia. Understanding the perspectives of thalassemia of the future community leaders (indigenous university students) is critical for developing a tailor-made preventive strategy relevant to their communities. In this study, we aimed to assess the level of knowledge and attitudes towards thalassaemia among indigenous university students and determine their thalassemia carrier status. Methods A cross-sectional survey was conducted among 251 tribal university students using a published questionnaire between May and October 2018. Half of the students underwent thalassemia carrier screening by haemoglobin electrophoresis. Descriptive and inferential statistical procedures were used for data analysis. Results More than half (55%) of the indigenous students had never heard the term 'thalassaemia'. Around half of the marriages in their communities were consanguineous. The mean knowledge score was very poor (4.91 ± 2.65) which was not associated study disciplines, and year of study. Nearly 39% of the students were found to be the carrier of E trait, while 1.8% of them had beta trait and 7% E disease. Thalassaemia carrier status was not significantly correlated with sex, ethnicity, or home districts. Conclusions For the first time, this study has identified knowledge gaps and misperceptions about thalassaemia among university students from indigenous communities with a higher prevalence of thalassaemia. This study serves as a baseline for future interventions (premarital and prenatal screening) targeting future community leaders.