Major Provider Knowledge Gap Delays Diagnosis, Treatment of Infantile Spasms

HOUSTON – A significant lack of awareness among healthcare providers may be promoting dangerous delays in diagnosis and treatment of infantile spasms, data presented at the 2016 American Epilepsy Society Annual Meeting indicate.¹

Unlike in other diseases, patient characteristics such as income, access to health care, insurance, and proximity to specialty care do not appear to have a significant positive impact on the diagnosis and treatment of infantile spasms. This is especially concerning, given that delays in treatment are associated with poor developmental outcomes.

In order to explore possible barriers to care, a team of researchers led by senior author Shaun Hussain, MD, of UCLA Medical Center and Mattel Children’s Hospital in Los Angeles, California, surveyed parents of children with confirmed infantile spasms. The survey aimed to document their experience with diagnosis and treatment, as well as disease onset, first visit with a healthcare provider, first visit with a neurologist, and first visit with an “effective provider,” deemed as a provider who both diagnosed infantile spasms and prescribed first-line treatment. Medical records were used to corroborate survey responses.

Overall, parents of 100 children with infantile spasms were surveyed. Twenty-nine percent of patients were seen by an effective provider within 1 week of onset of infantile spasms, with an overall median time of 24.5 days from spasm onset to first visit with an effective provider. Time to first visit with an effective provider was not affected by various sociodemographic characteristics, including race, ethnicity, religion, household income, education level, health insurance type, or distance from the tertiary center (P< .05). Parents noted that their concerns about their child’s health was often discounted by clinicians, including pediatricians, emergency medicine physicians, and neurologists. Many reported turning to online resources for information, leading to self-diagnosis and self-referral in some cases.

“Some of these children can be cured, but successful treatment often depends on prompt diagnosis,” Dr Hussain, who is also director of the UCLA Infantile Spasms Program, said in a statement.² “The delays we observed are simply horrifying and represent a failure of our healthcare system to address a preventable cause of mental retardation.”

Dr Hussain encourages parents who think their child may be having infantile spasms to insist that a video electroencephalography be performed, noting that many of the children involved in the study will likely suffer a 15-point reduction in IQ due to the delay in diagnosis and treatment.

“Pediatricians are bombarded with questions from concerned parents and are just trying to reassure them, but in this case, that can be catastrophic,” he said. “Our goal is to eliminate all barriers to care and give these vulnerable infants the best possible chance of a good outcome.”

Disclosures: This study was supported by the Elsie and Isaac Fogelman Endowment, the Hughes Family Foundation, and the UCLA Children’s Discovery and Innovation Institute.

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References

1. Lay J, Cheng E, Weng J, et al. Significant delay in diagnosis and treatment of infantile spasms common. Presented at: 2016 American Epilepsy Society Annual Meeting; December 2-6, 2016; Houston, TX. Abstract 2.087.
2. Infantile spasms often not diagnosed promptly, study finds [press release] Houston, TX: American Epilepsy Society. December 4, 2016.