Advancing Quality of Life through Thalassaemia Awareness with THALEA

Abstract

Thalassemia remains a pressing hereditary health burden, particularly impacting developing countries by straining families and healthcare systems. The increasing prevalence of thalassemia carriers is a cause for concern, as many of them appear healthy and unaware of their risk, which increases the likelihood that two carriers may marry and have a 25% chance of having a child with thalassemia major. This highlights the importance of premarital thalassemia screening, which remains non-mandatory for prospective marriage couples in Malaysia, unlike premarital HIV testing. Current national thalassemia initiatives have introduced thalassemia screening in government schools among fourth-form students, yet this overlooks those enrolled in private schools. Not only that, but recent studies have also shown that awareness of thalassemia and its hereditary transmission among young people is limited, despite health promotional efforts. Hence, we developed and validated the Thalassemia Education and Awareness (THALEA) Kit—a theory-driven health education intervention designed for delivery by medical personnel to high school students. THALEA aims to enhance knowledge, shift attitudes, and strengthen intentions among high school students to undergo thalassemia screening. Promoting early screening during adolescence, prior to family planning, is crucial for preventing thalassemia major births, thereby contributing to improved health outcomes and a better quality of life in the long term. The THALEA Kit was developed according to the Analysis, Design, Development, Implementation, and Evaluation (ADDIE) framework. By leveraging the Theory of Planned Behavior (TPB), eight experts contributed to the design and development process. Nine educational materials, available in both English and Malay languages, were included in the THALEA Kit, comprising a PowerPoint presentation, poster, guidebook, comic book, quiz, and four short videos. THALEA was evaluated by calculating the Content validity index (n = 9) and face validity index (n = 30). The item-level I-CVI ranged from 0.89 to 1.00. The S-CVI/Ave was 0.95, indicating excellent overall agreement on item relevance. The I-FVI ranged from 0.90 to 1.00. The average S-FVI/Ave was 0.96, indicating excellent face validity across all items. Limitations include THALEA being primarily developed from literature and expert input, with limited integration of other stakeholder perspectives, such as those of parents. Additionally, its validation is context-specific to Malaysian schools, which may affect its generalizability. In conclusion, THALEA was developed based on a relevant theory and demonstrates strong validity, which supports its potential to enhance thalassemia knowledge, shift attitudes towards a positive direction, and increase screening intentions among adolescents, especially in private institutions.