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Abstract Details

Analysis of Physician Notes to Examine the Clinical and Humanistic Burden of Patients with Dravet Syndrome and Lennox-Gastaut Syndrome in the United States
Epilepsy/Clinical Neurophysiology (EEG)
P4 - Poster Session 4 (11:45 AM-12:45 PM)
DS and LGS are rare, childhood-onset, developmental epileptic encephalopathies distinguished by frequent seizures, and cognitive, behavioral, and developmental issues profoundly impacting patients’ and caregivers’ lives. 
To characterize the clinical and humanistic burden of Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS).
Natural language processing (NLP) technology retrospectively analyzed physician-patient interactions recorded in Amplity Insights' medical transcription database. Eligible patients had ≥1 inpatient or outpatient record and a DS or LS diagnosis, based on symptoms and/or genetic or electroencephalography findings. Descriptive characteristics, seizure and nonseizure burden, and quality-of-life (QoL) impacts were summarized. 

Between January 2010—January 2022, NLP queries identified 166 patients with DS and 1063 patients with LGS treated with ≥1 antiseizure medication (ASM). Most patients with data were White (DS: 95%; LGS: 90%), aged <18 years in the DS group (83%) and ≥18 years in the LGS group (58%). Most common comorbidities were autism spectrum disorder (DS: 19%), cardiovascular disease (DS: 15%; LGS: 21%), and cerebral palsy (LGS: 19%). Among patients mentioning seizures (DS: n=164; LGS: n=1036), onset causes were unknown (DS: 48%; LGS: 55%), generalized (DS: 38%; LGS: 38%), and focal (DS: 15%; LGS: 7%). The most frequent seizure type in both groups was convulsive (DS: 39%; LGS: 28%). Nonseizure burden included impaired/delayed communication skills (DS: 31%; LGS: 38%), with nonverbal communication most impacted (DS: 22%; LGS: 34%). Half of all patients (DS: 51%; LGS: 50%) experienced developmental delays other than communication/alertness/disruptive behavior issues. Most frequently reported QoL impacts on patients included sleep issues (DS: 13%; LGS: 10%) and feeding-tube use (DS: 8%; LGS: 8%). Caregivers’ burden was mentioned for 8% (DS) and 14% (LGS) of patients.

Analysis of this transcription database revealed that despite treatment with ASMs, patients with DS and LGS experience seizures, nonseizure symptoms, and QoL burdens that extend to caregivers. 
Satish C. Rao, MD, MS
Dr. Rao has received personal compensation for serving as an employee of Takeda Pharmaceuticals. Dr. Rao has stock in Takeda Pharmaceuticals.
David Iwanyckyj No disclosure on file
Sally Wade (Wade Outcomes Research and Consulting) No disclosure on file
Pablo Racana No disclosure on file
Fernando Otalora No disclosure on file
Mei Lu (Takeda Pharmaceuticals USA Inc.) No disclosure on file