You Do Not Look Sick What does that mean anyway? What would you like me to look like? Do you need me to dress different, walk different, talk different? Why do you expect proof of my illness? It is not a badge of honor. Is it wrong that I place time and effort into my personal appearance, don’t you? Maybe I clean up oh so nice because I have been told that I look sick for a good portion of my life. I fight hard so that I am not defined by my illness. This illness has minimized my opportunities, my self-awareness and your awareness of me too and now that I have broken through the clutch of not looking well, do you want me to prove that I am sick by looking sick? If my life had a voice and it spoke to you of my journey, you wouldn’t believe it and because of God’s grace, you cannot see it. Because my scars have healed and love shields me. Thank God I do not look like what I’ve been through and what I am fighting through. I wanted to let you know that nobody has a perfect life, some less than others. Let’s rephrase this “you don’t look sick” declaration to say “you look good today.” You just might bring some sunshine into someone’s cloudy day.   Marie Ojiambo, PharmD Founder Sickle Strong Initiative Horsham, Pennsylvania, United States

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 nonfunctional 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. Abstract source