JMIR Publications

ABSTRACT

Background:

Sickle-Cell Disease (SCD) is a hematological genetic disease affecting over 25 million people worldwide. The clinical manifestations of SCD are related to hemolytic anemia and vaso-occlusion, which lead to acute and chronic pain symptoms and organ infarction. 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 are largely under-resourced. Consequently, patients are left to self-manage. Mobile health (mHealth) apps for chronic diseases’ self-management are now flooding app stores. However, evidence remains unclear about the effectiveness of mHealth apps and literature indicates low user engagement and poor adoption rates. Finally, few apps have been developed for SCD patients and none encompass their numerous and complex self-management needs.

Objective:

This study aims at identifying factors that may influence the long-term engagement and user adoption of mHealth among the particularly isolated community of adults SCD patients living in low-prevalence, high-income countries.

Methods:

Semi-structured interviews were conducted. Interviews were audiotaped, transcribed verbatim and analyzed using thematic analysis. Analysis was informed by Braun and Clarke framework and mapped to the COM-B model (capability, opportunity, motivation, and behavior). Interview results were translated into high level functional requirements (FR) and non-functional requirements (NFR) to guide the development of future mHealth interventions.

Results:

6 males and 4 females were interviewed. Patients were aged between 21 and 55 years old. 30 FR and 31 NFR were extracted from the thematic analysis. The majority of participants (8/10) was concerned about increasing their physical capabilities through the automated regulation of their blood parameters and by becoming 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 of respondents (7/10) reflected a strong desire to receive alerts when they would reach their own physiological limitations (i.e. during physical activity). Concerning social opportunity, most of respondents (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 underlined their desire to live a normal life. Finally, NFRs included inconspicuousness and customizability of user experience, automatic data collection, data shareability and data privacy.

Conclusions:

Our findings suggest that motivation and engagement with mHealth technologies among SCD patients living in low-prevalence, high-income countries could be increased by providing features that clearly benefits them. Self-management support and self-care decision aid are patients’ major demands. Since SCD self-management requires a high cognitive load due to complex and multiple components self-care practices, natural user interfaces such as mixed reality or speech recognition should be explored. Some of the required technologies already exist but must be integrated, adapted or improved to meet SCD patients’ specific needs.