In this scoping review, we aimed to summarize the literature on recreational/non-medical cannabis (NMC) use in people with epilepsy (PWE), focusing on the experience, habits, and beliefs of PWE regarding NMC.

The use of medical cannabis among PWE has recently been garnering increasing interest. However, little is known about the use of NMC in PWE.

Four databases were searched for studies describing NMC use in PWE. NMC was defined as cannabis products procured from sources other than by prescription. Original research that detailed the experience, habits, and/or beliefs of PWE regarding NMC use was included. Data pertaining to study identification, demographics, NMC use, and epilepsy characteristics were extracted. Descriptive statistical analyses and reflexive thematic analyses were performed to map these data.

In total, 3,228 records were screened, and 66 were included: 45 had mainly adult samples, whereas 21 had mainly pediatric samples. Most studies were published after 2010 and were cross-sectional. The median sample size of PWE using cannabis in these studies was 24.5 (1–37,945). No studies showcased elderly PWE, and most had predominantly Caucasian samples. The lifetime prevalence of NMC use in PWE was variable, ranging between 0.69% and 76.8%. Factors frequently associated with NMC use in PWE were male sex, younger adult age, and lower education status. Children took NMC primarily for seizure control, using high CBD/THC ratios, and only orally. Adults took NMC for various reasons including recreationally, using variable CBD/THC ratios, and predominantly through smoking. Most studies showed that PWE perceived that NMC aided in seizure control. Other aspects pertaining to NMC use in PWE were rarely reported and often conflicting.

The literature on NMC use in PWE is sparse and heterogeneous, with many salient knowledge gaps. Further research is necessary to better understand the experience, habits, and beliefs of PWE pertaining to NMC.