Impact of Comprehensive Follow Up Care on Clinical Outcomes of a Pediatric Sickle Cell Anemia Population in Kampala, Uganda

Name: Alyyah Malick
School: Vagelos College of Physicians & Surgeons, Class of 2022. Varmus Global Scholar 2019
Mentor: Nancy Green, MD


Children with sickle cell anemia (SCA) in sub-Saharan Africa are at high risk of disease-associated stroke and mortality. In a prospective observational study, we: 1) assessed hospitalization, stroke, and mortality in 337 children ages 1-4 years who received standard care at the Mulago Hospital Sickle Cell Clinic (MHSCC) in Kampala; and 2) compared clinical outcomes to those in 100 children provided with comprehensive regular follow-up care within the same SCA clinic but on the placebo arm of a clinical trial (NOHARM). Both cohorts were offered care for their SCA and its complications, including folic acid, penicillin prophylaxis, and malaria prevention. Neither group was treated consistently with hydroxyurea. While MHSCC suggests quarterly follow-up, many patients attend clinic only when ill. Consented clinic parents (N=337) received a telephone interview occurring two years after entry. Descriptive analysis and Kaplan Meier analysis was performed. In the MHSCC cohort, over a two-year period the frequency of hospitalization was 58.2%, transfusion 41.5%, stroke 3.0%, and mortality 7.4%. Hospitalizations and transfusions were significantly more frequent in the MHSCC cohort compared to the NOHARM placebo cohort. Results of this study suggest the importance of regular, comprehensive follow-up care in improving outcomes of children with SCA in Uganda.