JOPHON NCPD (2025 Mar/Apr) Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia-ARTICLE: JOPHON NCPD (2025 Mar/Apr) Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia

ARTICLE: JOPHON NCPD (2025 Mar/Apr) Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia

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This article describes the development and process evaluation of a patient education and “rebranding” initiative designed to increase stroke risk screening in children with sickle cell anemia (SCA) using transcranial Doppler (TCD) ultrasound. Although annual TCD screening ages 2–16 is guideline-recommended and can reduce stroke risk by over 90% when abnormal results prompt chronic transfusion therapy, real-world screening rates remain low.<br /><br />Using prior qualitative work from the DISPLACE consortium, the team identified that many caregivers found the term “TCD” confusing and wanted clearer language linking the test to stroke prevention. With patient/family input and professional branding support, the initiative created the new term “Sickle Stroke Screen,” along with a logo and brain/blood-vessel infographic. Families reviewed multiple prototypes and generally preferred “Sickle Stroke Screen,” noting it felt specific and motivating; “knowledge is power” messaging helped reduce fear around the word “stroke.” Hematology providers then helped iteratively develop a unified pamphlet (7th-grade reading level) and clinic poster; materials were later translated into Spanish, French, Swahili, and Haitian Creole.<br /><br />Thirteen sites implemented the educational materials during a 2-year multicomponent implementation trial (June 2020–June 2022), which overlapped with the COVID-19 pandemic. Process evaluation included surveys and interviews with providers and coordinators, and endpoint surveys with 80 caregivers. Providers and coordinators reported that the materials were helpful, easy to adapt, and improved understanding, especially for families new to screening. The most consistent barrier was inconsistent delivery and terminology use due to busy workflows, entrenched “TCD” language, staff turnover, and pandemic-related disruptions. Caregivers responded positively: most liked and understood the pamphlet, felt motivated to act, and reported they would be likely to schedule annual screening if they received the pamphlet in clinic.

Keywords

sickle cell anemia

stroke risk screening

transcranial Doppler ultrasound

TCD screening adherence

pediatric stroke prevention

Sickle Stroke Screen rebranding

patient education materials

caregiver engagement

implementation trial process evaluation

DISPLACE consortium