Abstract
Background: There is a critical need for specialized training and education to improve clinical outcomes in sickle cell disease (SCD), underscored by the Lancet Commission on SCD (Piel et al. 2023). Virtual educational programs offer an innovative approach to enhancing healthcare provider knowledge and clinical competencies. The Global SCD Case Discussion Program is a collaborative initiative of St. Jude Children's Research Hospital and the Lusophone Alliance for SCD (ALUA). It was developed to address this need by providing multidisciplinary, international monthly virtual case discussions in Portuguese and English, modeled after the Project ECHO framework.
Objective: To evaluate participant demographics, geographic reach, and the impact of the Global SCD Case Discussion Program on healthcare professionals' knowledge and competency.
Methods: Participant data from January 2024 through July 2025, including registrant location and specialty, were collected via Zoom. Knowledge and competency gains after participation in monthly case discussions - one session conducted in Portuguese and one in English each month - were assessed using pre- and post-session questionnaires administered during the 2025 sessions, except June. The pre-questionnaire, distributed to registrants before each session, evaluated baseline self-reported knowledge and clinical competency related to the session's topic. The post-questionnaire, completed by attendees immediately following the session, reassessed these domains and captured perceptions of content applicability and anticipated future utility in clinical practice. Completion rates and changes in self-reported knowledge and competency ratings were analyzed.
Results: The English-language program recorded 522 registrants, 87% from the Global South, and an average attendance of 57.5 participants per session across 15 sessions and 62 countries. Most registrants were physicians (62%, n=322), and while 59.8% (n=312) attended only one session, 5.6% (22/390 eligible registrants) participated in at least eight sessions. Pre-discussion questionnaire completion ranged from 20 to 60 registrants per month, while post-discussion completion ranged from 13 to 24 attendees, representing 21% to 39.3% of monthly attendance. Among registrants, pre-discussion High/Very High knowledge scores ranged from 50% and competency scores ranged from 50% to 58.3%, from January to July 2025. Among attendees, post-discussion knowledge scores increased from 76.9% to 89.5%, and competency scores from 69.2% to 89.5%.
The Portuguese-language program had 357 registrants from 30 countries, primarily from Portuguese-speaking countries, with an average attendance of 43.5 per session across 15 sessions. Physicians made up 64% (n=230) of registrants. 47.6% (n=170) of participants attended only one session, and 6.2% (17/276 eligible registrants) participated in at least eight sessions. Pre-discussion questionnaire completion ranged from 8 to 39 registrants per month, while post-discussion completion ranged from 14 to 26 attendees, representing 12.8% to 57.8% of monthly attendance. Among registrants, pre-discussion High/Very High knowledge scores ranged from 25% in January to 36.8% in July, and competency scores from 25% to 50%. Among attendees, post-discussion knowledge scores ranged from 64% to 71%, and competency scores from 64% to 70%, reflecting modest but intermittent improvements across sessions.
Conclusions: The Global SCD Case Discussion Program has demonstrated a wide international reach, with 879 registrants in 68 countries and consistent participation from the Global South. Questionnaire completion rates varied, but responses provided insight into participant demographics, engagement patterns, and perceived relevance of the sessions. While repeat session participation is low, our early effectiveness findings suggest improvements in perceived competency in SCD management and highlight opportunities to strengthen longitudinal engagement and participation. Future efforts will focus on expanding language offerings, improving questionnaire completion, and refining outcome measurement to support global sickle cell disease education better.
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