Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial...

Background: Effective education is an important component of optimal care for sickle cell anemia. The purpose of this article is to describe the development and process evaluation of an educational initiative for stroke risk screening, including perspectives from providers, coordinators, and caregivers as well as lessons learned for future initiatives. Method: A new term, "Sickle Stroke Screen," and an infographic for stroke risk screening were developed using patient/family input and branding expertise. A pamphlet and poster were developed via iterative feedback with hematological providers. Thirteen sites implemented the educational initiative as part of a multicomponent intervention study over 2 years. Evaluation included surveys and interviews with 13 site providers and six coordinators and surveys with 80 caregivers. Descriptive statistics were used for survey results, and content analysis was used for interviews. Results: Providers and coordinators commented on processes, successes, and barriers to the intervention. Key process themes included methods of delivering information and refining processes. Key successes included intervention impact, helpfulness, and ease of use. Inconsistency was a core barrier reported across the study with some improved success over time. Caregivers felt positively about the educational materials, including liking, understanding, and feeling motivated to act based on the new education. Discussion: Patient/family feedback and branding expertise were critical to developing an educational initiative that was well received by providers, coordinators, and other families. Inconsistency was a barrier worsened by healthcare complexity and the pandemic, though flexible delivery methods and commitment to education helped sites to be successful over time.