Network Publishes Scoping Review of Sickle Cell Disease Care
The Network’s recent review of care for people with sickle cell disease found that India was the only country with published examples of care for sickle cell disease in rural settings. Pictured above is a peer education session focused on sickle cell disease in Chhattisgarh, India, where Sangwari, a not-for-profit organization focused on equity and better healthcare, provides care using the PEN-Plus model. Dr. Gene Bukhman, co-chair of the Network and a coauthor of the scoping review, appears at the upper right of the photo; Dr. Yogesh Jain, a public health physician based in Chhattisgarh and a member of the Network’s Steering Committee, is in the center wearing a blue shirt.
NCDI Poverty Network researchers recently published a scoping review of models of care for people with sickle cell disease in low-income and lower-middle-income countries. Their findings confirmed the care limitations the Network has been seeking to overcome through the implementation of the PEN-Plus model.
“We found that, based on the literature, care for people with sickle cell disease in low-income and lower-middle-income countries is mostly limited to specialized clinics located in urban tertiary settings,” said Dr. Alma Adler, lead author of the paper and director of research and monitoring and evaluation at both the NCDI Poverty Network at the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital. “Only in India did we find examples of integrated care for people with sickle cell disease in rural settings.”
The review appeared in the April 2024 edition of The Lancet Haematology. Network members performed the work in collaboration with colleagues in the Department of Medical Oncology at the Dana-Farber Cancer Institute and in the Dana Farber/Boston Children's Cancer and Blood Disorders Center.