Thala_screen/lintas – Developing a Mobile Application to Identify Screening Targets in the Extended Family of Thalassemia

Abstract

Abstract Background Thalassemia poses a double burden on medical care and healthcare financing. Due to the high prevalence and the number of affected people which tends to increase in Indonesia, a national prevention and control program is the best rational approach to be implemented. Tailoring to limited resources, screening through the cascade method within extended families with thalassemia patients as index cases seems to be an appropriate approach. To address this, the Thala_screen/LINTAS mobile application was developed as a tool to determine screening targets within extended families with index cases. Methods The development of the application followed four phases. Firstly, content creation involved literature research, discussions with five experts, and pedigree design. Secondly, a trial phase by a forum group discussion was conducted with 30 subjects to evaluate the application's acceptability and user experience through quantitative and qualitative research. Thirdly, content validation was performed using an assessment sheet, which was reviewed by the experts twice. Lastly, a usability study was conducted with 25 parents of thalassemia patients at Hasan Sadikin General Hospital, using ABCs questionnaires after using the application. Results The application's content data was aligned with its objectives, including family demographic data presented in a pedigree chart. The initial dataset included thalassemia registry data. Quantitative research showed an 80.25% acceptability rate, while qualitative research indicated that the application provided was relevant, useful, and presented in an appealing format. However, accessibility received an unsatisfactory response initially, which improved after reevaluation, raising the total validity index from 0.63 to 0.86. The usability study revealed favorable mean scores for the action (2.92) and behavior (0.85) sections, indicating the subjects' interest and ease of using the application. Conclusion This study showed that the Thala_screen mobile application was an acceptable and feasible tool for identifying thalassemia carrier screening targets in extended families.