Educational Burdens for Children With Sickle Cell Disease in the US Vs Other Nations

Volunteer nurses giving checkups to underprivileged children.
Volunteer nurses giving checkups to underprivileged children.
Researchers sought to determine the educational burdens of children with SCD in the US compared with other nations.

The following article features coverage from the American Society of Hematology 2021 meeting. Click here to read more of MPR‘s conference coverage.


Results from the Sickle Cell World Assessment Survey (SWAY) suggest that pediatric patients in the US with sickle cell disease (SCD) undergo greater educational limitations than are seen in other high-income countries (HICs). These findings were presented in a poster at the 2021 American Society of Hematology (ASH) Annual Meeting by Fuad El-Rassi, MD, of the Emory University School of Medicine and the Georgia Comprehensive Sickle Cell Center at Grady Healthy System in Atlanta, Georgia, and colleagues.

In this study, patients from 6 to less than 18 years of age with SCD from across 16 nations were included in the pediatric portion of this survey about educational experiences. Patients 6 to 11 years of age were represented by proxy, such as by a parent or caregiver, while patients 12 years or older could either self-report or use a proxy. Adults with SCD were included in an adult survey of their educational experiences in childhood.

Results were analyzed by patient location within an HIC, a low-income country (LMIC), or within the US. HICs had a gross national income per capita of US $12,536 or more, but the US was considered apart from other HICs for this report.

“The gross domestic product of the US was approximately 15 times higher than other high-income countries, and 23 times higher than low- to middle-income countries,” Dr El-Rassi said in a presentation accompanying the research team’s poster, explaining differences in economic resources across countries included in the study. Beyond the US, 10 HICs and 5 LMICs were included for analyses.

In the pediatric survey, 77 respondents were from the US, 200 were in the HIC group, and 492 were in the LMIC group. Average ages of children were 11 or 12 years in each group. Across all survey questions regarding impacts of SCD on educational experiences, respondents in the US indicated greater impacts than seen for patients in HICs and LMICs.

Differences were greatest between US and HIC respondents in the pediatric survey. In comparing responses from the US and HICs, Dr El-Rassi said, “the US respondents showed nearly a 2-fold higher agreement for all statements except for reduced attendance.”

In the US, in the pediatric survey, 42% indicated that SCD had caused patients to miss a year of school or retake a class, compared with 14% in HICs and 32% in LMICs. SCD negatively impacted school test performance among 51% of US respondents in the pediatric survey, compared with 25% in HICs and 37% in LMICs. US adults also reported the greatest frequencies of negative impacts across all questions regarding their childhood educations.

In his presentation, Dr El-Rassi indicated that there may be differences in educational systems across countries, and in resource allocation in the US, where social determinants potentially are a contributing factor. “In conclusion, the results from the SWAY survey show a high impact of sickle cell disease on childhood education, which in the US requires further support for this patient population,” Dr El-Rassi concluded in his presentation.

Disclosures: Some authors have declared affiliations with or received grant support from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.


El Rassi F, James J, Andemariam B, et al. Children in the United States with sickle cell disease experience greater educational burden than those living in low/middle income and other high-income countries. Presented at ASH 2021; December 11 to 14, 2021. Abstract 3106.

This article originally appeared on Hematology Advisor