Parents who resort to using cannabis products to control treatment-resistant epilepsy in children perceive benefits that are not matched by objective results, an Australian-led study has found.
A survey of 312 caregivers of children with CDKL5 Deficiency Disorder (CDD) early-onset epilepsy found that one in four (26%) reported current or previous use of cannabis products for their child.
The international study, led by researchers at the University of WA, found that the most commonly used product was cannabidiol (CBD), used in 88% of cases, usually in an oil formulation. About half obtained cannabis products on prescription from a healthcare professional and 29% used it as part of a clinical trial.
Of the 70 families who reported on efficacy of cannabis products two thirds reported improvements in their child’s seizure control, with 54% perceiving a current improvement, and a further 16% reporting a temporary improvement.
In addition to improvements in seizure control, families perceived the additional benefits of cannabis use such as increased alertness and attention (26%) improved cognition in 14% as well as improvements in sleep, emotion/mood, appetite and speech/vocalization.
When asked about adverse effects, 78% reported ‘none’, while 12% reported sedation, somnolence or drowsiness, 6% reported gastrointestinal upset, and 4% reported an increase in oral secretions.
Most of those who perceived improvements in seizure control continued to use cannabis at 24 months follow up.
However, despite these positive perceptions, the study found no evidence of active use of cannabinoids being associated with objective reductions in seizure frequency nor in the number of antiepileptic drugs when compared to non-users.
There was also no evidence of a reduction in seizure frequency nor antiepileptic drug use at 24 month follow-up.
The study investigators said the mismatch between caregiver perception and objective evidence of seizure control might be due to a placebo effect from the widespread positive reports and media coverage relating to cannabis-based products.
“In the years leading up to this study, cannabis-based products attracted significant community attention, primarily driven by anecdotes of miraculous cures and a movement of public preference toward ‘natural’ therapies,” they wrote.
They conceded that benefits – or lack of them – would be difficult to ascertain in an observational study based on self reporting of seizure frequency. It was also likely that the initiation of cannabis-based products would be preceded by a progressive failure of antiepileptic drugs and worsening seizure control “which may obscure any small change in seizure frequency associated with these medications,” they said.
Nevertheless, the study provided a snapshot of how many families were using cannabis for treatment-resistant epilepsy and their beliefs about the efficacy and safety of cannabinoids, they concluded.
The findings are published in .Epilepsy and Behavior