Neurocognitive, School‐Based, and Quality of Life Outcomes for Youth With Sickle Cell Disease and Thalassemia: A Scoping Review

The medical burdens of sickle cell disease (SCD) and transfusion-dependent β-thalassemia (TDT) are chronic and cumulative, even in children. Yet the effects expand beyond medications and healthcare visits due to their impacts on school attendance, academic performance, and peer engagement. This scoping review explores the extent to which published research has explored the effects of SCD and TDT on educational success. The review synthesizes their effects on neurocognitive and academic performance alongside health literacy and any interventions that have been studied to mitigate their effects. In addition, the data offer insights into psychosocial impacts and health-related quality of life (HRQOL) for the two diseases, given that these factors can affect academic performance. For SCD in particular, neurocognitive deficits are evident compared to those without SCD, even without silent strokes, and their social and HRQOL are significantly impacted. Fewer data are available for TDT from an academic performance standpoint, but negative HRQOL effects are notable. This research is less commonly reported compared to traditional medical outcomes; however, because most medical outcomes are interwoven with social determinants of health, academic functioning cannot be ignored. After analyzing the data on school and HRQOL outcomes in SCD and TDT, the negative impacts on neurocognitive and psychosocial functions are significant, but data gaps demonstrate that more research toward evidence-based interventions must be undertaken.