Caregivers reported CBD improved seizures and non-seizure outcomes in severe epilepsy | Research

The takeaway

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.

Families of children with severe epilepsy, neurologists prescribing Epidiolex, epilepsy advocacy groups

93% planned to continue CBD

What the researchers 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.

Why it 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 numbers in context

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 the study worked

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.

What this study cannot 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.

How to read the evidence

Large real-world caregiver survey provides practical insights but lacks blinding, control group, and objective outcome measures.

When this study was published

2024 BECOME survey of US caregivers of LGS/DS patients on Epidiolex

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.

Questions still open

Are the non-seizure benefits of CBD mediated through different mechanisms than its anticonvulsant effects? Would objective cognitive testing confirm caregiver-reported improvements?

Common 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.

Read the original research

Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME survey.

Epilepsy research, 200, 107280

View on PubMed ↗Publisher’s paper ↗

Citation

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