The Next Step in Telehealth Education in a Low-Income Setting: Implementing a Project Echo for Sickle Cell Disease

Abstract

Background and Aims: Sickle Cell Disease affects nearly 100 million people worldwide and disease complications are responsible for over 50% of deaths among those affected with the most severe form. It is estimated that each year, over 300,000 children are born annually with this disease and over 70% of these births occur in Sub-Saharan Africa. In Kenya, approximately 14,000 children are born with Sickle Cell Disease each year with a greater incidence in malaria endemic areas including lake-region, western, and coastal regions. Advances have been made in the United States to reduce the disease related mortality at 5 years of age to 3%. However, in developing countries of Sub-Saharan Africa, this number is greater than 50%. Since 2011, hematologists from North American institutions have partnered with Kenyan specialists to deliver educational seminars in African counties with a high incidence of Sickle Cell Disease. As an expansion of these efforts, a telehealth educational platform has been developed, capable of providing ongoing collaboration and mentorship for high risk communities. Methods: The combined team of Kenyans and North American providers collaborated to launch a Project ECHO program focusing on Sickle Cell Disease. The virtual educational platform - a hub and spokes teaching model - was implemented based on previous success with other chronic diseases in the region. A complete panel of experts consisting of pediatric and adult hematologists from Kenya and the United States, nursing leadership, patient advocates, social workers, and local physician leaders was assembled as the hub team. Recruitment for the ECHO began in April 2022 in Western Kenya and consisted of participants from prior educational workshops and participants from other ECHO programs at county referral hospitals. A curriculum was built focusing on infant screening, infection prevention, and utilization of Hydroxyurea, with expanding topics based on community needs. The ECHO program occurred at monthly intervals utilizing the Zoom platform. The sessions consisted of both a scheduled didactic and a case-based discussion. The didactic was given by a Kenyan expert while the cases were submitted by ECHO participants from the community. Attendance was tracked by the ECHO platform automatically including recurrent attendance and participant county. Surveys were utilized on a semi-annual basis to further assess educational impact. Results: The program launched in June 2022 with initial success. Participation at early sessions averaged 60 attendees with participants attending from 24 of the 47 total counties in Kenya. ECHO leadership maintained fidelity to the model with an emphasis on dialogue, collaboration, and mentorship. The ECHO community has also flourished outside of the virtual sessions as evidenced by increased dialogue amongst participants via electronic messaging and an increase in Sickle Cell Disease referral patterns. Conclusions: Significant morbidity and mortality persists for sickle cell disease in low- and middle-income countries such as Kenya and education at the community level is a key mechanism to address these disparities. The utilization of a telehealth education program such as Project ECHO represents a strong mechanism to continue building local, regional, and international partnerships to improve care together.