Approximately 30% of individuals diagnosed with epilepsy fail to respond to standard treatment regimens. Cannabidiol (CBD) has recently been acknowledged as an effective treatment for forms of generalized epilepsy.  Research interest in the therapeutic potential of cannabis are ever-growing against the backdrop of legalization of both medical and recreational cannabis in many areas. Our goal is to conduct observational survey to assess cannabinoid compound (CC) usage in a sample of up to 200 individuals diagnosed with epilepsy.

CBD and other CCs have been studied for their anticonvulsant properties and CBD is approved to treat forms epilepsy. However, there remains a dearth of understanding on epilepsy patient perception and use of non-prescribed CCs which is of growing import with the rise in decriminalization and legalization of these substances around the country.

With consultative expert input, a web-based survey was developed. This survey was pretested and subsequently pilot tested among a focus patient group.  The survey was subsequently administered to patients with epilepsy diagnosis, as determined by an epilepsy subspecialist at the University of Colorado Hospital. The survey assessed frequency of use and mode of use of CCs and patient perception of efficacy of CCs for seizure management and effect on quality of life.

Preliminary results from our initial subset of subjects reveal the following population insights: 1) 58% of respondents exhibit treatment-refractory epilepsy, 2) 11/28 respondents use cannabis, 3) of those cannabis users, 0% found CC use to increase or have a negative effect on seizures; however, 4) of those same cannabis users, 68% of responders found that CC use had a positive effect (e.g., reduced negative impact or perceived reduced frequency) on seizures.

These preliminary findings suggest that CC use is prevalent in the epilepsy population and, in general, is perceived to reduce the negative experience of their seizure condition.