Authors :
Presenting Author: Kaley Marcinski Nascimento, MD – Washington University in St Louis
Yifan Li, MD – NYU
Binx Lin, MD – UCSF
Tracy Dixon-Salazar, PhD – Lennox-Gastaut Syndrome (LGS) Foundation
M. Scott Perry, MD – Cook Children’s Physician Network
Kevin Xu, MD – WashU
Fábio Nascimento, MD – Washington University School of Medicine
Rationale:
In June 2018, the US Food and Drug Administration (FDA) approved pharmaceutical grade cannabidiol (CBD; Epidiolex®) for the treatment of seizures associated with Lennox Gastaut syndrome (LGS). Anecdotal clinical experience suggests this approval was followed by an increase in new LGS diagnoses in the US.
Methods:
To investigate this observation, we computed the annual number of new LGS diagnoses in the US from 2017 to 2023 using a large, population-based database of electronic health records.
Results:
We identified a temporary spike in the number of new LGS diagnoses in 2019: the incidence rate rose roughly 30% from 2018 to 2019, and almost 60% from 2017 to 2019, before it returned to pre-FDA approval baseline (2020-2023) (Figure 1). We speculate that the 2019 spike in LGS incidence is related to the 2018 FDA approval of CBD for LGS. Factors that possibly contributed to this diagnostic shift include patient-caregiver interests and clinician practices to gain access to CBD (Figure 1). Clinician practices may have involved applying/updating LGS ICD codes to patients previously diagnosed with LGS and misdiagnosing patients with severe epilepsies as LGS.
Conclusions:
This work sheds light on the clinical and research importance of appropriately using the LGS ICD code and ensuring accurate, reliable diagnosis of LGS based upon standardized, well-defined criteria.
Funding: None