Key data elements to design self-care mobile-based application for hemophilia

Mobile-based applications have become increasingly critical for healthcare delivery worldwide over the past few years. Developing a mobile application for hemophilia self-care is one of the tools that can provide helpful information about the disease, reminders, and treatment recommendations. This study aims to determine a minimum data set as the first step in developing a hemophilia self-care mobile application.

This descriptive-analytical study was conducted in 2023 and consisted of three steps. In the first step, relevant databases such as PubMed, Scopus, and Science Direct were reviewed. The data elements collected in the previous step were combined, and their validity was checked and confirmed in the second step. In the last step, all ten hematologists-oncologists at Imam Khomeini hospital complex, affiliated with Tehran university of medical sciences, completed a questionnaire to score the identified elements. Statistical analysis was performed using SPSS (Ver 16).

Based on global guidelines, published research, and specialists' feedback, the minimum data set for hemophilia management was developed. There are four main categories and twenty-three subclasses of identified elements, including demographic data (5 elements), disease management-related data (12 elements), educational data (3 elements), and technical capabilities (3 elements). To determine the importance of each data element, we calculated the percentage points provided by specialists, which were 95.50% for demographic data, 96.45% for disease management-related data, 95.83% for educational data, and 95.83% for technical capabilities.

Due to the lack of hemophilia’s minimum data set at the national level, this study can serve as a turning point toward standardized data collection for this disease. By utilizing these precise, coherent, and standard data elements, hemophilia management and quality of life can be improved.