Carol Ireland and Lisa Todd
Epilepsy Action, Australia
Title: Attitudes and experience of cannabinoid-based therapies for epilepsy in the Australian community
Biography
Biography: Carol Ireland and Lisa Todd
Abstract
Purpose: Epilepsy Action Australia (EAA) sought to understand the attitudes toward and lived experiences of adults and parents of children living with epilepsy of cannabinoid-based therapies in an ever-changing climate of public opinion, government legislation and clinical trials in Australia.
Method: Two studies were undertaken with the first informing the second study. A nationwide online survey was conducted assessing demographics, clinical factors, including diagnosis and seizure types and experiences with and opinions towards cannabis use in epilepsy. The second study (PELICAN) focused on experiences of 61 families of children with epilepsy under the age of 16 years who desired, were currently or had previously administered cannabinoid-based therapies to their children to manage seizures. Semi-structured interviews were conducted; samples collected with subsequent laboratory analysis.
Results: 976 responses met the inclusion criteria of the initial survey. 15% of adults with epilepsy and 13% of parents/guardians of children with epilepsy were currently using, or had previously used, cannabinoid-based products to treat epilepsy. Of those with a history of cannabis product use, 90% of adults and 71% of parents reported success in reducing seizure frequency. 41 of the 65 families participating in the second study (PELICAN) were currently or had previously administered cannabinoid-based therapies to their children. Analysis of the products highlighted a wide variability of cannabinoid content and low concentration of Cannabidiol (CBD) while Δ9-tetrahydrocannabinol (THCΔ9) was present in nearly every sample.
Conclusion: The survey provides insight into the use of cannabis products for epilepsy, in particular some of the likely factors influencing use, as well as novel insights into the experiences of and attitudes towards medicinal cannabis in people with epilepsy in the Australian community while the PELICAN study highlighted the profound variation in the illicit cannabis extracts being utilized as therapies in epilepsy in Australia warranting further investigation.