Tailored care for children with autism improves EEG experience
Most children with a developmental disability can complete EEG with sufficient support.
Electroencephalographic (EEG) monitoring is an important tool for diagnosing seizures, epilepsy and other neurologic conditions. However, many children with developmental disabilities – including autism – have difficulty undergoing hospital tests like EEG. Furthermore, sometimes these tests are not prescribed or turn out to be unsuccessful.
In a new study published in Journal of Child Neurology, findings from a Children’s National Hospital team indicate that most children with a developmental disability can complete EEG with sufficient support. Special planning can identify children who would benefit from accommodations to help them complete the study successfully.
What this means
Children with developmental disabilities have an increased risk of epilepsy and need for overnight video EEG monitoring. However, video EEGs have historically been considered difficult to complete for this population. Experts at Children’s National implemented a coordinated team approach to help children with developmental disability tolerate overnight video EEGs. The project involved a caregiver preprocedure questionnaire shared with the team to create personalized care plans.
These findings suggested that most children with developmental disability can complete video EEG with sufficient support. Preprocedure planning can identify children who would benefit from additional accommodations.
Moving the field forward
The findings show new knowledge through vigorous research about the patient experience and the value of a team dedicated to helping children with development disabilities undergo hospital tests.
“We were excited to find that with special planning more children with developmental disabilities could complete an EEG,” said Elizabeth Wells, M.D., senior vice president at the Center for Neuroscience and Behavioral Medicine at Children’s National, and one of the study’s authors. “We thought it was important to study and discover that children from minority or underrepresented groups were less likely to access support services, which means more work and research is necessary to ensure that services are accessible to these children.”
The authors also found that parent-reported difficulties with communication and cooperation were associated with video EEG success, which means doctors and hospital teams should always ask about and listen to parent input in planning the tests for children.
How Children’s National is leading the way
Healthcare workers often express lack of confidence in their ability to provide care for patients with autism and associated disabilities and express an interest in gaining access to resources and training to better care.
By developing a program to improve care and then studying it through rigorous research, the authors aspire to spread a message of hope. Programs like these can ensure all kids get the tests and care they need. Children’s National is also a leader in showing the importance of parent input in medical care planning, which too often is not a routine part of care at hospitals.
Further research is necessary to clarify which supports are most helpful.
Three prior students who trained at Children’s National are lead authors, Kalyn Nix, Jessica Smith and Atara Siegel, Ph.D. Additional authors from Children’s National include Kathleen Atmore, Psy.D., and Elizabeth Wells, M.D.
You can read the full study, Individualized Care Delivery for Children With Autism and Related Disabilities Undergoing Overnight Video Electroencephalography (EEG): One Hospital’s Experience With a Coordinated Team Approach, in the Journal of Child Neurology.
