Project Details

Improving knowledge and care for adolescents with sickle cell disease in Tamale, Ghana

Miriam Osei, MD, MPH

Summary

BACKGROUND: Sickle cell disease (SCD) affects ~500,000 infants annually, majority in sub-Saharan Africa, with 18,000 cases per year in Ghana. Transition from pediatric to adult care starts at the vulnerable and young age of ~13 years in Ghana, making transition more challenging. GAP: While infrastructure for pediatric SCD care exists in many LMIC settings, there is a notable deficiency in both infrastructure and expertise in managing adolescents during the critical transition period marked by increased morbidity and mortality. This study addresses gaps in SCD knowledge and management among adolescents in Tamale, Ghana, with a focus on implementing a transition intervention to facilitate transition and improve care. HYPOTHESIS: Identifying SCD knowledge and self-management challenges uniquely faced by adolescents in Tamale, Ghana will inform the development of a targeted educational intervention collaboratively developed with adolescents to facilitate a smoother transition and overall care. METHODS: The initial phase will be a survey-guided structured interview of adolescents on SCD knowledge and self-management. Insights gained and challenges identified in phase 1, will inform the creation of an SCD education intervention, collaboratively done with patient, caregiver, and local provider input to address the identified gaps with a focus on feasibility, acceptability, as well as impact. RESULTS: Pending. IMPACT: Equipping adolescents with comprehensive knowledge and skills in managing SCD will facilitate the transition process, enhance retention in care, and mitigate elevated morbidity and mortality during this critical period. The implementation of this model in Tamale can be used in other African settings to effectively bridge gaps in care of this vulnerable group.