Caregivers reported CBD improved seizures and non-seizure outcomes in severe epilepsy
Among 498 caregivers of patients with Lennox-Gastaut or Dravet syndrome, 85% reported seizure frequency improvements with CBD, plus significant non-seizure benefits in alertness (85%), emotional functioning (82%), and communication (74-79%), with 93% planning to continue.
Quick Facts
What This Study Found
Caregivers reported improvements in seizure frequency (85%), seizure severity (76%), and seizure-free days (67%). Non-seizure improvements: alertness/cognition (85%), emotional functioning (82%), communication (74-79%), sleep (51%), ADLs (51%), physical functioning (46%). 18-56% of patients who had no seizure improvement still reported non-seizure benefits. 93% planned to continue CBD.
Key Numbers
498 caregivers (97% parents). Patients: mean age 16, median CBD dose 14 mg/kg/day, median 4 concomitant seizure medications. 16% achieved seizure freedom in past month. 93% planned to continue.
How They Did This
BECOME survey of 498 US caregivers of patients with LGS (80%) or DS (20%) treated with CBD (Epidiolex) for 3+ months. Cross-sectional online survey comparing current month to pre-CBD period using Likert scales.
Why This Research Matters
Clinical trials of CBD focused primarily on seizure reduction. This real-world survey reveals substantial non-seizure benefits that patients and families value, which may be an independent reason to continue treatment even when seizure control is incomplete.
The Bigger Picture
The finding that non-seizure improvements occurred even in patients without seizure reduction suggests CBD may have direct effects on cognition, alertness, and mood independent of its anticonvulsant properties. This could redefine how treatment success is measured in severe epilepsy.
What This Study Doesn't Tell Us
Retrospective caregiver report susceptible to recall and expectancy bias. No control group or blinding. Selection bias (caregivers who continue treatment are more positive). Likert scales provide subjective impressions, not objective measures.
Questions This Raises
- ?Are the non-seizure benefits of CBD mediated through different mechanisms than its anticonvulsant effects?
- ?Would objective cognitive testing confirm caregiver-reported improvements?
Trust & Context
- Key Stat:
- 93% planned to continue CBD
- Evidence Grade:
- Large real-world caregiver survey provides practical insights but lacks blinding, control group, and objective outcome measures.
- Study Age:
- 2024 BECOME survey of US caregivers of LGS/DS patients on Epidiolex
- Original Title:
- Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME survey.
- Published In:
- Epilepsy research, 200, 107280 (2024)
- Authors:
- Berg, Anne T(2), Dixon-Salazar, Tracy(3), Meskis, Mary Anne(2), Danese, Sherry R, Le, Ngoc Minh D, Perry, M Scott
- Database ID:
- RTHC-05133
Evidence Hierarchy
Frequently Asked Questions
Does CBD help with more than just seizures?
According to caregivers, yes. 85% reported improvements in alertness and cognition, 82% in emotional functioning, and 74-79% in communication, in addition to seizure benefits. Some improvements occurred even without seizure reduction.
How many patients become seizure-free on CBD?
In this survey, 16% achieved seizure freedom in the past month. However, 85% reported some improvement in seizure frequency, and 76% noted reduced seizure severity.
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Cite This Study
https://rethinkthc.com/research/RTHC-05133APA
Berg, Anne T; Dixon-Salazar, Tracy; Meskis, Mary Anne; Danese, Sherry R; Le, Ngoc Minh D; Perry, M Scott. (2024). Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME survey.. Epilepsy research, 200, 107280. https://doi.org/10.1016/j.eplepsyres.2023.107280
MLA
Berg, Anne T, et al. "Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME survey.." Epilepsy research, 2024. https://doi.org/10.1016/j.eplepsyres.2023.107280
RethinkTHC
RethinkTHC Research Database. "Caregiver-reported outcomes with real-world use of cannabidi..." RTHC-05133. Retrieved from https://rethinkthc.com/research/berg-2024-caregiverreported-outcomes-with-realworld
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.