Caregivers Reported Wide-Ranging Improvements Beyond Seizure Control from CBD in Severe Epilepsy
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.
Quick Facts
What This Study 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.
Key Numbers
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 They Did This
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.
Why This Research 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 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.
What This Study Doesn't 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.
Questions This Raises
- ?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?
Trust & Context
- Key Stat:
- 87% of caregivers reported seizure improvement; 94% planned to continue CBD
- Evidence Grade:
- Moderate evidence from a large caregiver survey, though limited by the lack of objective measures and control group.
- Study Age:
- 2025 analysis of the BECOME survey on real-world CBD outcomes in severe epilepsy.
- Original Title:
- 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.
- Published In:
- Seizure, 130, 32-40 (2025)
- Authors:
- Perry, M Scott(3), Dixon-Salazar, Tracy(3), Meskis, Mary Anne(2), Danese, Sherry R, Saurer, Timothy B, Vyas, Kishan, Berg, Anne T
- Database ID:
- RTHC-07354
Evidence Hierarchy
A snapshot of a population at one point in time.
What do these levels mean? →Frequently Asked Questions
Does CBD help with more than just seizures?
In this caregiver survey, over 75% reported improvements in cognition, communication, and emotional functioning beyond seizure control. These broader benefits may be direct effects of CBD or secondary to having fewer and less severe seizures.
Did any patients get worse on CBD?
Yes, 4-26% of caregivers reported some worsening in at least one area. Despite this, 94% planned to continue CBD treatment, suggesting the benefits outweighed the drawbacks for the vast majority.
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Cite This Study
https://rethinkthc.com/research/RTHC-07354APA
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
MLA
Perry, M Scott, et al. "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, 2025. https://doi.org/10.1016/j.seizure.2025.04.017
RethinkTHC
RethinkTHC Research Database. "Caregiver-reported non-seizure and seizure outcomes with can..." RTHC-07354. Retrieved from https://rethinkthc.com/research/perry-2025-caregiverreported-nonseizure-and-seizure
Access the Original Study
Study data sourced from PubMed, a service of the U.S. National Library of Medicine, National Institutes of Health.
This study breakdown was produced by the RethinkTHC research team. We analyze and report published research findings without making health recommendations. All interpretations are based solely on the published abstract and study data.