Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements (Preprint)

Abstract

Sickle cell disease (SCD) is a hematological genetic disease affecting over 25 million people worldwide. The main clinical manifestations of SCD, hemolytic anemia and vaso-occlusion, lead to chronic pain and organ damages. With recent advances in childhood care, high-income countries have seen SCD drift from a disease of early childhood mortality to a neglected chronic disease of adulthood. In particular, coordinated, preventive, and comprehensive care for adults with SCD is largely underresourced. Consequently, patients are left to self-manage. Mobile health (mHealth) apps for chronic disease self-management are now flooding app stores. However, evidence remains unclear about their effectiveness, and the literature indicates low user engagement and poor adoption rates. Finally, few apps have been developed for people with SCD and none encompasses their numerous and complex self-care management needs.

This study aimed to identify factors that may influence the long-term engagement and user adoption of mHealth among the particularly isolated community of adult patients with SCD living in low-prevalence, high-income countries.

Semistructured interviews were conducted. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic analysis. Analysis was informed by the Braun and Clarke framework and mapped to the COM-B model (capability, opportunity, motivation, and behavior). Results were classified into high-level functional requirements (FRs) and nonfunctional requirements (NFRs) to guide the development of future mHealth interventions.

Overall, 6 males and 4 females were interviewed (aged between 21 and 55 years). Thirty FRs and 31 NFRs were extracted from the analysis. Most participants (8/10) were concerned about increasing their physical capabilities being able to stop pain symptoms quickly. Regarding the psychological capability aspects, all interviewees desired to receive trustworthy feedback on their self-care management practices. About their physical opportunities, most (7/10) expressed a strong desire to receive alerts when they would reach their own physiological limitations (ie, during physical activity). Concerning social opportunity, most (9/10) reported wanting to learn about the self-care practices of other patients. Relating to motivational aspects, many interviewees (6/10) stressed their need to learn how to avoid the symptoms and live as normal a life as possible. Finally, NFRs included inconspicuousness and customizability of user experience, automatic data collection, data shareability, and data privacy.

Our findings suggest that motivation and engagement with mHealth technologies among the studied population could be increased by providing features that clearly benefit them. Self-management support and self-care decision aid are patients’ major demands. As the complexity of SCD self-management requires a high cognitive load, pervasive health technologies such as wearable sensors, implantable devices, or inconspicuous conversational user interfaces should be explored to ease it. Some of the required technologies already exist but must be integrated, bundled, adapted, or improved to meet the specific needs of people with SCD.