71% of Pediatric Epilepsy Patients Stopped Using Cannabis Extracts, and Perceived Benefit Was the Only Factor That Kept Them Going | Research

The takeaway

Among 119 children with epilepsy using oral cannabis extracts, 71% discontinued during the study period, with perceived seizure benefit the only factor predicting continued use, and only 13% achieving greater than 50% seizure reduction.

Parents considering cannabis extracts for their child's epilepsy.

71% of families discontinued cannabis extracts; only 13% saw 50%+ seizure reduction

What the researchers found

A retrospective review of 119 pediatric epilepsy patients using oral cannabis extracts (OCEs) revealed high rates of discontinuation. 71% stopped using their cannabis product during the study, with an average duration of use of 11.7 months.

Perceived seizure benefit was the only factor significantly associated with longer use (p < 0.05). However, only about 13% of patients achieved greater than 50% seizure reduction. Adverse events were reported in 19% of patients, with somnolence (drowsiness) and paradoxical worsening of seizures being the most common.

Surprisingly, families of children with Dravet syndrome (the condition that would later respond best to pharmaceutical CBD in clinical trials) terminated OCE use more quickly than families of children with other epilepsy syndromes.

Why it matters

This study provides a reality check for cannabis-for-epilepsy enthusiasm. While surveys of cannabis-using families report high satisfaction rates, this clinical chart review tells a different story: most families discontinued cannabis extracts, and the minority who continued did so because they perceived seizure benefit. The low rate of 50%+ seizure reduction contrasts with the more optimistic patient-reported data from surveys.

The numbers in context

119 patients. 71% discontinued OCEs. Average use: 11.7 months (range 0.3-57 months). ~13% achieved >50% seizure reduction. 19% had adverse events. Somnolence and seizure worsening most common side effects. Dravet families discontinued faster.

How the study worked

Retrospective chart review of children and adolescents who received oral cannabis extracts for epilepsy treatment. Duration of use served as a proxy measure for perceived benefit.

What this study cannot tell us

Retrospective chart review relies on clinical documentation quality. The OCE products were unregulated and varied in composition and potency. Duration of use is an imperfect proxy for efficacy. Some families may have stopped for reasons other than lack of efficacy (cost, access, family decisions).

How to read the evidence

Moderate evidence from a retrospective chart review with a reasonable sample size.

When this study was published

Published in 2017, before pharmaceutical CBD (Epidiolex) was available.

The bigger picture

The gap between survey-based satisfaction data (where 90% report benefit) and clinical chart review data (where 71% discontinue) highlights the importance of data source. Families who continue using cannabis and respond to surveys are self-selected for positive experiences. Clinical records capture the full picture, including those who tried and stopped.

Questions still open

Why did Dravet families discontinue sooner, given that CBD later proved effective for Dravet? Were the OCE products used by these families of sufficient quality and CBD content? Would standardized pharmaceutical CBD products produce better retention rates?

Common questions

Do cannabis extracts work for childhood epilepsy?

In this study of 119 children, most families stopped using cannabis extracts, and only about 13% achieved significant seizure reduction. This contrasts with more optimistic survey data because clinical records capture all patients, including those who found cannabis unhelpful.

Why did most families stop using cannabis extracts?

The study found that perceived seizure benefit was the only factor that predicted continued use. Families that did not see meaningful improvement tended to stop. Side effects (drowsiness, seizure worsening) affected 19% and likely contributed to some discontinuations.

Read the original research

Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.

Epilepsia, 58(1), 123-127

View on PubMed ↗Publisher’s paper ↗

Citation

Treat, Lauren; Chapman, Kevin E; Colborn, Kathryn L; Knupp, Kelly G. (2017). Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.. Epilepsia, 58(1), 123-127. https://doi.org/10.1111/epi.13617