Sickle Cell Disease and Self- Management Tools

Presentation given at the American Public Health Association (APHA) Annual Conference. Objective: Sickle cell disease (SCD) affects over 100,000 individuals in the United States, with many from underserved communities with limited access to disease management resources. This study determined access to technology resources and preferences for self-care management and social support in adults with SCD and their caregivers residing in urban and rural communities. Methods: Community Health Workers led community listening sessions (n=4) with adults with SCD and caregivers (n=43) in two urban and two rural communities throughout Tennessee. Participants were asked questions on: (1) methods of finding information about SCD self-care; (2) satisfaction with current methods for finding SCD management information; (3) support for SCD management; 4) important features for development of a smartphone application (app) SCD; and (5) areas of benefit for using a smartphone app for SCD self-care. Content analysis identified emerging themes. Results: Five themes emerged: (1) desired information; (2) types of support for SCD self-care; (3) recommendations for disseminating information to the sickle cell community; (4) barriers and facilitators to using an app; and (5) desirable features for a SCD mobile app. Most participants prefer to receive regular emails from a credible source. Participants expressed a range of comfort levels with using a mobile app but were open to an app for SCD self-care and social support. Conclusions: We learned more about how to reduce information access barriers by offering a technology platform based on patient and caregiver preferences. Findings can be used to develop a patient-centered, user-friendly smartphone application to facilitate disease self-management among individuals with SCD and their caregiver residing in rural communities