Voluntary thalassemia screening: behaviours and constructs among youths from a thalassemia hot spot in Sri Lanka

This study aimed to explore the behavioural constructs influencing voluntary thalassemia screening among youth in Anuradhapura, a district with a high prevalence of beta thalassemia trait in Sri Lanka. A descriptive cross-sectional study was conducted among the vocational training students in the district. A self-completed questionnaire was administered to all the eligible, consenting participants. Among 202 participants (ages 18-43), 7.9% (n=15) had undergone thalassaemia screening, and 5.9% (n=12) were aware of the local walk-in screening programme. 97.4% did not perceive themselves at risk of having thalassaemia trait. Of the 93 respondents (49.2%), 49 (26.5%) indicated that they would likely undergo premarital screening, but only 82 (45.6%) would inquire about their partner’s thalassaemia status if they themselves had thalassaemia trait. Misconceptions regarding thalassaemia (curability and perceived stigma), a pragmatic approach, and uncertainty were the three themes identified by analysing answers to the open-ended questions on the potential course of action if one's partner was identified as having a thalassaemia trait. The study highlights low awareness, poor perceived susceptibility, and stigma regarding thalassemia trait among youth in a high-risk region. A shift toward universally offered, decentralised screening, such as mandatory premarital or school-based programs, may enhance the uptake of thalassaemia screening.