Table 4.

Essential components of a digital sickle cell disease self-management program.

Format		Web-based or mobile app
Educational content to include
	Medication	Dosages; mechanism of action; side effects; consequences of nonadherence; alternative options for treatment; interactions with drugs, alcohol, and other risk-taking behaviors; cost of medication and coverage by insurance; addiction, tolerance, appropriate use; and safe-keeping medications
	Information about SCDa	What is SCD?; genetics of SCD; what happens during a vaso-occlusive crises crisis?; symptoms and types of SCD (eg, milder types, pica, priapism, enuresis); treatment options; complications of SCD; latest research and developments in SCD; and information on risk-taking behaviors
	Preventing crises and pain management	Strategies to prevent vaso-occlusive crises (eg, keeping hydrated, limits to physical exertion, dressing in layers); how to manage stress in school?; what to do when a crisis comes on; how to make the most of being involved in school and activities without triggering a crisis; multimodal 3P approach to pain management (psychological, physical, pharmacological); at what point should I come to the hospital if I have a crisis?; and advocating for appropriate treatment at hospitals
	Resources	Information about SCD organizations; social and financial supports available for SCD; available SCD-related education to families; and insurance information
	Communication	Self-advocacy; keeping up with schoolwork; communicating with peers about SCD; communicating with teachers, professors, and employers about SCD; and communicating with HCPb about SCD
	Future	Guidance on pursuing successfully postsecondary education and careers; implications for relationships with others with sickle cell trait; and risk-taking behaviors and SCD such as drugs, alcohol, and sex
Desired characteristics and features
	Cultural appropriateness	Addressing misconceptions about SCD; plain language for immigrant populations; and communicating with extended family and community members about SCD
	Social support	Forum or chat option to communicate with other youth with SCD; peer mentorship from older adolescents with SCD; and examples of role models
	Ask an HCP questions	Forum to ask questions; submit a question to be answered by an HCP; and live chat with an HCP
	Interactive and multimedia	Videos of youth explaining their experiences with SCD; visuals and diagrams; and games
	Safety and trustworthiness	Username and password-protected use; monitored social features; and evidence-based medical and practical information

^aSCD: sickle cell disease.

^bHCP: health care provider.