The director of the Pediatric Epilepsy Program at Weill Cornell Medicine detailed the reasons behind why patients with infantile spasms do not receive recommended care.
“What we’ve learned is that 90% was better than before, but not good enough. We want to do better. We’re setting our goal at 95% intentionally because we think 1 in 20 is the sweet spot for the approximate rate where there’s some reasonable exceptions that make sense.”
Results from a center-to-center study of recommended care in patients with infantile spasms (IS) presented at the 73rd annual meeting of the American Epilepsy Society (AES) showed that 1 in 10 patients did not receive recommended care. Some of the barriers observed in implementing care standards included administration of an outside therapy, extreme or complex sickness, or intentional use of non-first line therapy.
Zachary Grinspan, MD, MS, the director of the Pediatric Epilepsy Program at Weill Cornell Medicine, and colleagues observed steady improvement from a prior study, which demonstrated only 1 in 7 patients with IS receiving recommended care. While Grinspan noted that he and his team were happy with the progress they have made, they’re still not satisfied.
In an interview with NeurologyLive, Grinspan detailed the barriers that prevent recommended care, and what can be done to improve adherence to IS guidelines.