Design and Refinement of CyberCellTM, a Virtual Reality Health Education Program for Adolescents and Young Adults with Sickle Cell Disease

For people living with sickle cell disease (SCD), the risk for disease complications and premature death rises sharply in adolescence and young adulthood, when chronic organ damage is compounded by reduced preventive care. To make informed health care decisions, adolescents and young adults (AYAs) require effective education about their health condition and treatment options. We aimed to systematically design and develop a user-centered, evidence-based virtual reality (VR) health education program to optimize the use of SCD therapies among AYAs with SCD. We engaged a diverse team including AYAs with SCD and their caregivers, multidisciplinary SCD clinicians and researchers, patient education specialists, and health technology developers. Stakeholder meetings and codesign workshops were used to evaluate end-user and implementer needs, develop low- and high-fidelity prototypes of the VR program, and draft an implementation plan. Subsequently, iterative cycles of usability testing were conducted with 17 AYAs with SCD (M = 16.82 years, 59% male, 94% Black) and six SCD clinicians (83% female, 50% Black) to assess technical and functional reliability and to refine the implementation plan. Rapid assessment procedures were used to synthesize think-aloud field notes and qualitative interview data into a summary matrix of potential prototype modifications. Through these iterative, user-centered design processes, our team developed and refined CyberCellTM, a VR health education program for AYAs with SCD. CyberCell provides immersive, interactive, and evidence-based education about SCD and treatment options, with the goal of facilitating deeper learning and increasing motivation for health behavior change. Think-aloud procedures revealed various challenges with wayfinding and interaction in early prototype versions, which were addressed to improve user experience. Interviews demonstrated satisfaction with CyberCell and potential positive impacts on patient–provider communication and patient health behaviors. Future research will evaluate the feasibility and effectiveness of CyberCell on enhancing the reach and uptake of disease-modifying therapies, thereby improving health for AYAs with SCD.