In a survey of 243 caregivers of patients with Lennox-Gastaut or Dravet syndrome taking CBD with clobazam, 87% reported seizure frequency improvement and over 75% noted gains in cognition, communication, and emotional functioning.
Caregivers of children with severe epilepsy, neurologists prescribing CBD, epilepsy advocacy organizations
87% of caregivers reported seizure improvement; 94% planned to continue CBD
What the researchers found
Caregivers reported improvements across multiple domains: seizure frequency (87%), severity (81%), alertness/cognition/executive function (84%), language/communication in non-verbal patients (81%) and verbal patients (76%), emotional/social functioning (79%), daily activities (56%), physical functioning (44%), and sleep (56%). 94% planned to continue CBD treatment. Some worsening was noted in 4-26% of caregivers across domains.
Why it matters
While CBD's seizure-reducing effects are well established, this survey captures the broader quality-of-life improvements that caregivers observe but clinical trials may miss. The high rates of cognitive and communication improvement suggest CBD may benefit brain function beyond just seizure control in these populations.
The numbers in context
N=243 (76% LGS, 24% DS, 52% male, mean age 15). Median CBD dose: 14 mg/kg/day. Median 4 other ASMs. Improvements: seizures 87%, severity 81%, cognition 84%, non-verbal communication 81%, verbal communication 76%, emotional/social 79%, daily activities 56%, sleep 56%, physical 44%. 94% planned to continue. 4-26% reported some worsening.
How the study worked
Subgroup analysis of the BECOME survey, collecting caregiver-reported outcomes for 243 patients with LGS or Dravet syndrome aged 2+ years receiving CBD (Epidiolex) with concomitant clobazam for at least 3 months.
What this study cannot tell us
Caregiver-reported survey data without objective measurements. No control group for comparison. Potential recall bias comparing current status to pre-CBD initiation. Patients were already on CBD for 3+ months, creating survivorship bias (those who stopped are excluded). Funded by the manufacturer.
How to read the evidence
Moderate evidence from a large caregiver survey, though limited by the lack of objective measures and control group.
When this study was published
2025 analysis of the BECOME survey on real-world CBD outcomes in severe epilepsy.
The bigger picture
These caregiver-reported outcomes help paint a fuller picture of CBD's real-world impact in severe epilepsy. The improvements in cognition, communication, and emotional functioning may reflect both direct effects of CBD and indirect benefits of better seizure control, reinforcing the value of comprehensive outcome assessment.
Questions still open
- Are the cognitive and communication improvements a direct effect of CBD or secondary to seizure reduction? Would objective neuropsychological testing confirm the caregiver-reported improvements? How do outcomes differ between LGS and DS patients?
Common questions
Does CBD help with more than just seizures?
Did any patients get worse on CBD?
Read the original research
Caregiver-reported non-seizure and seizure outcomes with cannabidiol and clobazam in patients aged ≥2 years with Lennox-Gastaut syndrome or Dravet syndrome: A subgroup analysis of the BECOME survey.
Seizure, 130, 32-40
Citation
Perry, M Scott; Dixon-Salazar, Tracy; Meskis, Mary Anne; Danese, Sherry R; Saurer, Timothy B; Vyas, Kishan; Berg, Anne T. (2025). Caregiver-reported non-seizure and seizure outcomes with cannabidiol and clobazam in patients aged ≥2 years with Lennox-Gastaut syndrome or Dravet syndrome: A subgroup analysis of the BECOME survey.. Seizure, 130, 32-40. https://doi.org/10.1016/j.seizure.2025.04.017
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