One of the important steps in controlling thalassemia is screening thalassemia carriers through prevention programs using a prospective, retrospective or combined methods approach [11]. The development and utilization of this application are expected to be employed by the caregivers and the patients of thalassemia major in Indonesia to register personal and family data. Thus, this registration process aims to create a mapping of affected people and establish a comprehensive family pedigree model.
This application enables users to consolidate data in one place, with each data category serving a specific purpose. It will record demographic data, transfusion and therapy information, as well as extended family demographic details such as date of birth, marital status, and home address. The child-bearing age group is considered a key screening target considering its members have the potential to give birth to offspring with thalassemia major if both parents are thalassemia carriers [11, 31]. The complete address is valuable for mapping and determining the nearest primary health centers equipped with hematology analyzers for early thalassemia screening through blood tests. This is expected to streamline the identification of screening targets and direct them to the nearest health centers. However, to achieve this stage, government support and effective coordination with relevant stakeholders are essential in the implementation of thalassemia prevention efforts.
A pedigree helps to identify patients and families who have an increased risk for genetic disorders, to optimize counseling, screening, and diagnostic testing, with the goal of disease prevention or early diagnosis and management of the disease [26]. The design of pedigrees is expected to depict family relationships and facilitate the identification of screening targets. In the development process, pedigrees are able to be created within a web-based application, therefore pedigrees in the mobile application are narrated and then transformed into a pedigree chart.
Numerous themes emerged from our FGD results, encompassing valuable information sources, relevance and awareness enhancement, reluctance to share information, privacy and security concerns, as well as comfort. The challenges encountered by diverse participants in using and consistently engaging with health applications revolved around the commitment required to sustain app usage, primarily concerning the investment of time and effort.
Less than a quarter of participants expressed a lack of necessity for using the application in their daily lives or work. Those participants might consider this unnecessary due to their poor knowledge of thalassemia. In a study conducted in Indonesia by Wahidayat et al., it was revealed that most respondents (62.1%) had poor knowledge about thalassemia [13]. However, another study revealed that increasing knowledge about thalassemia does not establish evidence that the respondents possess a high willingness to screen [32].
Some healthcare professionals engaged in the FGD also did not feel the need to use this application as data collection regarding thalassemia care was not emphasized as a requirement within their workplace programs. This might be caused by the fact that screening programs in Indonesia have not yet been established as a mandatory requirement by the government. The willingness to invest more in treatment rather than prevention was and still is, in many settings, limited by the lack of in-depth knowledge by health authorities of the real needs of these conditions. In addition, perceived ‘other’ priorities, such as infectious diseases, have been put forward as a reason for avoiding addressing effectively the issue of hereditary diseases [3]. While they did not perceive the app as essential for themselves, they believed that the application might prove beneficial for specific individuals, such as patients or those in need of motivation or establishing healthy habits. The low application literacy awareness prompted us to undertake refinements in the subsequent application development phase to ensure broader acceptance of this application.
Well-defined directions and comprehensive guidelines for app utilization held immense significance, particularly for individuals facing challenges in thalassemia carrier collective information that affect focus and lead to swift frustration. Their dissatisfaction highlights the critical role of user-friendly instructions and comprehensive support mechanisms in fostering a positive user experience. The appearance of an application helps the user engage with it by making it more appealing to them, while the functionality helps create a positive impression on the users’ minds for long-term interaction and satisfaction [33]. Therefore, the IT expert makes the application simpler, easier to use, and easier to comprehend with an attractive appearance that is still in line with its purpose.
Many mobile applications come with social networking features and allow sharing of personal information. By sharing this information with family or friends, individuals may receive both informational and emotional social support. However, simultaneously, sharing information with family or friends could potentially lead to social conflicts. The status of thalassemia in a family is still not fully accepted and is considered a stigma, leading to a tendency to keep it hidden [34–36]. Some participants are unwilling to share information about this due to these cultural sensitivities. The primary reason for this reluctance to share personal information is the fear that this information could negatively affect their social lives. Another reason for being hesitant to share personal information is the concern about how this information might be exploited by third parties, such as health insurance companies or advertisers [30]. Despite most participants having reservations about sharing personal information, they still provide positive responses that they would share some information based on need and security, as long as they have control over who they share with and what type of information is shared. Therefore, the application design has used an email and password for each account to ensure privacy and data safety.
The application’s objective is to facilitate ease of use and to extend its reach to a broader population segment. Furthermore, our endeavors sought to enhance the accuracy of information delivery by minimizing usage errors. After conducting user-friendliness evaluations on different subjects, it was observed that there was a reduction in the time required to input data into the application. This indicates that the updated application is easier to use, although some subjects still encountered difficulties. Variations in age, gender, and profession among patients and caregivers emerge as critically important factors in experience, engagement, and fluency with digital devices [37].
While internet access has increased in Indonesia, there are still areas with limited internet connectivity [20]. This makes it difficult for some people to download and use health applications, especially in rural areas. As a result, many Indonesians are still not accustomed to digital technology. Some individuals may not understand how to use health applications correctly or may not have access to the necessary devices [20].
Another significant challenge is ensuring that users consistently use health applications. Many people may download these applications but may not commit to using them regularly. When using health applications, many individuals are concerned about the privacy and security of their personal data. In collecting and storing health data, applications must adhere to strict privacy standards [38].
The limitation of this application is that it can only be accessed on Android mobile phones. Currently, the development of the thala_screen/LINTAS mobile application has not reached the mapping of screening targets to the nearest primary healthcare facility since support from the government and various stakeholders is required to reach this stage. Moreover, thalassemia screening in Indonesia is not covered by the government yet and the existing government program to equip primary health centers with hematology analyzers has not been well distributed, particularly in remote areas. To date, the Ministry of Health of Indonesia has launched the "Satu Sehat" health application as one of the healthcare system transformations that pertains to digital transformation. It is expected that this application can be integrated with the Thala_screen/LINTAS application for widespread use across the entire nation.