Currently submitted to: JMIR mHealth and uHealth
Date Submitted: Aug 9, 2019
Open Peer Review Period: Aug 12, 2019 - Sep 17, 2019
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Development of A Mobile App “InCharge Health” to Improve Adherence to Hydroxyurea in Sickle Cell Disease: A User-centered Design Approach
Sickle cell disease (SCD) is an inherited blood disorder causing acute complications and chronic progressive end organ damage. SCD is associated with significant morbidity, early mortality and impaired health-related quality of life as well as increased acute healthcare utilization. Hydroxyurea is an FDA-approved medication that reduces disease complications, acute health-care utilization, and costs. However, adherence to hydroxyurea is suboptimal. mHealth interventions have the potential to assist with overcoming barriers to hydroxyurea adherence among patients with SCD but few examples exist that are specific to this population.
To design a mobile application (app) intervention for individuals with SCD to improve adherence to hydroxyurea, using a user-centered design that was informed by specific barriers to hydroxyurea adherence and utilization in this population.
The current study consisted of 4 phases. In Phase 1, individuals with SCD and health care providers participated in an Optimization Digital Workshop. In Phase 2, patients completed surveys pertaining to their interest in mHealth use, barriers and facilitators to hydroxyurea use, and health literacy. Phases 3 and 4 involved semi-structured interviews and focus groups, respectively – which used the Health Belief Model as the framework to investigate drivers of poor hydroxyurea adherence and to inform the development of an app prototype. In addition, in Phase 4, patients provided feedback on the preliminary app prototype and its features, which was in turn used to finalize the app prototype.
Barriers to hydroxyurea adherence were consistent with the literature and included forgetfulness and several specific thoughts and emotions associated with hydroxyurea use (e.g., fear of side effects, depression, stigma, hopelessness). In addition, more than half of participants reported potentially low health literacy. Preferred patient app features included seven key components (1) medication reminders/tracker, (2) disease education, (3) communication, (4) personalization, (5) motivation, (6) support during pain episodes, and (7) social support. Utilizing a user-centered design approach, data obtained from patients and providers were translated into features within the app, mapping to components of the Health Belief Model and the specific drivers of hydroxyurea adherence and matched the literacy level of the population and resulted in the development of a novel mobile app called InCharge Health.
The InCharge Health app, is a mHealth intervention developed with substantial input from users and mapping the Health Belief Model as the framework that guided the choice for its components. InCharge Health is a customized product for the SCD population aimed at optimizing medication adherence, with the end goal of improving quality of life and health outcomes among patients with SCD. The efficacy and implementation of the InCharge Health app as an mHealth intervention to promote hydroxyurea adherence will be tested in a future stepped-wedge multicenter trial for adolescents and adults with SCD. Clinical Trial: Clinicaltrails.gov NCT03344900
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