Understanding Infantile Epileptic Spasms Syndrome

Infantile Epileptic Spasms Syndrome (IESS), also known as infantile spasms, is the most common form of epilepsy observed during infancy. Characterized by spasms, loss of consciousness, and often intellectual disability, IESS is a severe disorder that requires early diagnosis and immediate referral to a neurologist for effective treatment. However, recent research suggests that infants from historically marginalized racial/ethnic backgrounds are likely to experience delays in these crucial steps.

Racial Disparity in IESS Referral and Treatment

A national study has uncovered a disturbing trend in the evaluation and treatment of IESS. The study found that Black children and children with public insurance are less likely to receive standard treatment for IESS compared with white children and children with private insurance. Furthermore, Boston Children’s Hospital conducted a study that discovered children with BIPOC (Black, Indigenous, and People of Color) parents or guardians were more likely to experience delays in referral to a neurologist, even when other factors were considered. This racial disparity in healthcare means that these children are more likely to suffer from the severe consequences of untreated or delayed treatment of IESS.

Boston Children’s Hospital’s Initiative to Address Disparity

To address this alarming disparity, Boston Children’s Hospital has launched a comprehensive initiative. A key component of this initiative is the creation of an open-access training module for front-line providers. This educational module, titled OPENPediatrics, is designed to equip healthcare professionals with the knowledge and skills necessary to identify IESS and ensure prompt treatment. The module includes lectures and videos, making it an accessible and practical resource for all healthcare providers.

The Role of Qualitative Research in Unearthing Root Causes

Alongside the OPENPediatrics module, Boston Children’s Hospital is also conducting a qualitative research study. The study aims to uncover the root causes of care inequities in IESS treatment. By understanding the systemic biases that contribute to the racial disparity in IESS referrals and treatment, the hospital hopes to improve its care systems through quality improvement methodology.

Pharmacists’ Role in Addressing IESS

Pharmacists also play a vital role in the race against IESS. With their knowledge of medications and their side effects, they can help ensure that infants diagnosed with IESS receive the most effective treatment. Recent research findings, personal stories of families coping with IESS, and stakeholder feedback all highlight the importance of a multi-disciplinary approach in managing this condition.


Addressing the racial disparity in IESS referral and treatment is crucial to ensure all infants, regardless of their racial or ethnic background, receive the care they need. Boston Children’s Hospital’s initiative, which includes the OPENPediatrics module and a qualitative research study, is a step in the right direction. It emphasizes the need for education, multidisciplinary collaboration, and systemic change in order to achieve health equity in IESS care.


Source: medriva.com, Ethan Sulliva