Abstract
BackgroundThere is currently limited evidence on the level and intensity of physical activity in individuals with hemophilia A. Mobile technologies can offer a rigorous and reliable alternative to support data collection processes but they are often associated with poor user retention. The lack of longitudinal continuity in their use can be partly attributed to the insufficient consideration of stakeholder inputs in the development process of mobile apps. Several user-centered models have been proposed to guarantee that a thorough knowledge of the end user needs is considered in the development process of mobile apps.ObjectiveThe aim of this study is to design and validate an electronic patient-reported outcome mobile app that requires sustained active input by individuals during POWER, an observational study that aims at evaluating the relationship between physical activity levels and bleeding in patients with hemophilia A.MethodsWe adopted a user-centered design and engaged several stakeholders in the development and usability testing of this mobile app. During the concept generation and ideation phase, we organized a need-assessment focus group (FG) with patient representatives to elicit specific design requirements for the end users. We then conducted 2 exploratory FGs to seek additional inputs for the app’s improvement and 2 confirmatory FGs to validate the app and test its usability in the field through the mobile health app usability questionnaire.ResultsThe findings from the thematic analysis of the need-assessment FG revealed that there was a demand for sense making, for simplification of app functionalities, for maximizing integration, and for minimizing the feeling of external control. Participants involved in the later stages of the design refinement contributed to improving the design further by upgrading the app’s layout and making the experience with the app more efficient through functions such as chatbots and visual feedback on the number of hours a wearable device had been worn, to ensure that the observed data were actually registered. The end users rated the app highly during the quantitative assessment, with an average mobile health app usability questionnaire score of 5.32 (SD 0.66; range 4.44-6.23) and 6.20 (SD 0.43; range 5.72-6.88) out of 7 in the 2 iterative usability testing cycles.ConclusionsThe results of the usability test indicated a high, growing satisfaction with the electronic patient-reported outcome app. The adoption of a thorough user-centered design process using several types of FGs helped maximize the likelihood of sustained retention of the app’s users and made it fit for data collection of relevant outcomes in the observational POWER study. The continuous use of the app and the actual level of engagement will be evaluated during the ongoing trial.Trial RegistrationClinicalTrials.gov NCT04165135; https://clinicaltrials.gov/ct2/show/NCT04165135
Highlights
BackgroundPatients with hemophilia A, an X-linked recessive bleeding disorder that occurs in approximately 1 in 5000 live male births, suffer from bleeding episodes, especially in their joints and muscles, and moderate impairment of balance and mobility associated with reduced bone mineral density in both adolescence and adulthood [1]
This paper reports on the process adopted for the development of a mobile app aimed at collecting patient-reported outcome measure user-centered design (UCD) (PROM) in patients with hemophilia A during the POWER study
We applied UCD for the development of the electronic patient-reported outcome (ePRO) app currently in use in the POWER observational study, adopting an iterative process in which progressive modifications were informed by the participants’ inputs and by the technical feasibility of the proposals. This approach has been identified as effective when adapted to mobile health (mHealth) apps [37], with different frameworks being used as powerful alternatives to the shared design based on the end users’ preferences [27]
Summary
Patients with hemophilia A, an X-linked recessive bleeding disorder that occurs in approximately 1 in 5000 live male births, suffer from bleeding episodes, especially in their joints and muscles, and moderate impairment of balance and mobility associated with reduced bone mineral density in both adolescence and adulthood [1]. Because of these limitations, patients with hemophilia typically exhibit reduced levels of physical activity [2]. Several user-centered models have been proposed to guarantee that a thorough knowledge of the end user needs is considered in the development process of mobile apps
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