Abstract
Objective: To better understand patterns of use, access limitations, and effects of artisanal “hemp extract” on Utah patients with intractable epilepsy to improve patient care and inform state legislation regarding cannabidiol.
Background: Since the 2014 enactment of Utah House Bill 105, allowing use of “hemp extract” for intractable epilepsy, many families are eager to try a cannabidiol product. Given limited enrollment in controlled trials, many turned to artisanal products with minimal regulation or usage guidelines. In conjunction with the Utah Department of Health, we attempt to better understand the experience of these patients.
Design/Methods: All 138 patients with intractable epilepsy (age: 1–63 years, average: 21) who were actively enrolled in Utah’s “hemp extract” registration card program were mailed a voluntary 12 item questionnaire. 46 (33%) responded. 41 (89%) respondents had begun “hemp extract” and reported on usage and beneficial/adverse effects.
Results: Challenges in choosing, obtaining, or dosing a product were top reasons for not using. 80% of users reported knowing product concentration, but only 64% could provide one. Most frequent dosing was twice daily (54%), average usage duration was 14 months (range 1–36) and average cost was $177/month (range $40–500). Most reported benefits, with 68% reporting decreased seizure frequency and/or severity. Nearly 2/3 reported other benefits (improved mood, alertness, or sleep) and 22% reported adversities (increased seizures, fatigue, or diarrhea). Only 2 reported “serious” adverse effects (mouth swelling and increased seizures). Only 31% of eligible users renewed their card. Those who did not cited lack of efficacy, cost, or difficulties accessing product.
Conclusions: Roughly 1/3 of Utah patients with intractable epilepsy using “hemp extract” could not report actual dosage. However, many used the product for >1 year and endorse improvements in seizure control as well as other benefits with few side effects. Results may help inform patient care, additional research, and future legislation.
Disclosure: Dr. Wilson has nothing to disclose. Dr. Shuman has nothing to disclose. Dr. Sweney has nothing to disclose. Dr. Van Orman has nothing to disclose. Dr. Filloux has nothing to disclose.
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