Perception of cannabidiol efficacy among people with refractory epilepsy cared for by a Paraguay association: a cross-sectional study
DOI:
https://doi.org/10.5281/zenodo.21746025Keywords:
cannabidiol, refractory epilepsy, medicinal cannabis, Paraguay, surveys, questionnairesAbstract
Introduction: Drug-resistant epilepsy remains a relevant clinical problem, and cannabidiol (CBD) has attracted interest as a complementary treatment in several epileptic syndromes and in real-world use settings. In everyday practice, it is also important to understand how patients perceive benefit, access, and impact on quality of life.
Objective: To describe the perception of cannabidiol efficacy among people with refractory epilepsy cared for by the Medicinal Cannabis Association of Paraguay (CAMEDPAR).
Materials and methods: A quantitative, descriptive, cross-sectional study was conducted. Seventy people with refractory epilepsy linked to CAMEDPAR were included. Data were collected with an online survey of 11 closed dichotomous and polytomous questions. Data were processed in an Excel database and with SPSS to obtain absolute and relative frequencies.
Results: Fifty-seven participants (81.4%) reported having experienced effects or benefits with CBD. Reported benefits included greater alertness or connection (19.3%), improved behavior (19.3%), reduced seizures (15.8%), improved feeding (8.8%), and cognitive improvement (8.8%). Regarding the regulatory framework, 33 participants (47.1%) rated regulatory measures as very good and 28 (40.0%) as good. Forty people (57.1%) indicated they never had difficulties accessing or using CBD. Regarding quality of life, 32 participants (45.7%) reported little improvement and 25 (35.7%) much improvement. According to the instrument’s categorization, overall perception of efficacy was high in 47 participants (67.1%).
Conclusions: Most respondents perceived benefits associated with CBD use, especially related to seizure reduction and some behavioral or cognitive aspects. However, findings should be interpreted as perceptions from a local sample and not as demonstration of clinical efficacy.
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Kwan P, Arzimanoglou A, Berg AT, Brodie MJ, Allen Hauser W, Mathern G, et al. Definition of drug resistant epilepsy: Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069-77. https://doi.org/10.1111/j.1528-1167.2009.02397.x
Kalilani L, Sun X, Pelgrims B, Noack-Rink M, Villanueva V. The epidemiology of drug-resistant epilepsy: A systematic review and meta-analysis. Epilepsia. 2018;59(12):2179-93. https://doi.org/10.1111/epi.14596
Silva GD, Del Guerra FB, Lelis MO, Avelar FG, de Araujo JQ, Moreira FA, et al. Cannabidiol in the treatment of epilepsy: A focused review of evidence and gaps. Front Neurol. 2020;11:531939. https://doi.org/10.3389/fneur.2020.531939
von Wrede R, Helmstaedter C, Surges R. Cannabidiol in the treatment of epilepsy. Clin Drug Investig. 2021;41(3):211-20. https://doi.org/10.1007/s40261-021-01003-y
Devinsky O, Cross JH, Laux L, Marsh E, Miller I, Nabbout R, et al. Trial of cannabidiol for drug-resistant seizures in the Dravet syndrome. N Engl J Med. 2017;376(21):2011-20. https://doi.org/10.1056/NEJMoa1611618
Devinsky O, Patel AD, Cross JH, Villanueva V, Wirrell EC, Privitera M, et al. Effect of cannabidiol on drop seizures in the Lennox-Gastaut syndrome. N Engl J Med. 2018;378(20):1888-97. https://doi.org/10.1056/NEJMoa1714631
Wong ML, Sahebkar F, Checketts D, Cooper MS, French JA, Houser WA, et al. Add-on cannabidiol treatment for drug-resistant seizures in tuberous sclerosis complex. JAMA Neurol. 2021;78(3):285. https://doi.org/10.1001/jamaneurol.2020.4607
O'Brien TJ, Berkovic SF, French JA, Soares-da-Silva P, D'Souza J, Baisley K, et al. Adjunctive transdermal cannabidiol for adults with focal epilepsy. JAMA Netw Open. 2022;5(7):e2220189. https://doi.org/10.1001/jamanetworkopen.2022.20189
Silvinato A, Floriano I, Bernardo WM. Use of cannabidiol in the treatment of epilepsy: Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex. Rev Assoc Med Bras. 2022;68(10):1345-57. https://doi.org/10.1590/1806-9282.2022d689
Fazlollahi A, Zahmatyar M, ZareDini M, Khoramnia S, Ghazizadeh H, Ferns GA, et al. Adverse events of cannabidiol use in patients with epilepsy. JAMA Netw Open. 2023;6(4):e239126. https://doi.org/10.1001/jamanetworkopen.2023.9126
Patel SP, Grinspoon R, Fleming BM, Pathak AP, Matos M, Morris M, et al. The long-term efficacy of cannabidiol in the treatment of refractory epilepsy. Epilepsia. 2021;62(7):1594-603. https://doi.org/10.1111/epi.16936
Szaflarski JP, Bebin EM, Cutter G, DeWolfe J, Dure LS, Gaston TE, et al. Cannabidiol improves frequency and severity of seizures and reduces adverse events in an open-label add-on prospective study. Epilepsy Behav. 2018;87:131-6. https://doi.org/10.1016/j.yebeh.2018.07.020
Kochen S, Villanueva M, Bayarres L, Daza-Restrepo A, Oddo S, Bualo F, et al. Cannabidiol as an adjuvant treatment in adults with drug-resistant focal epilepsy. Epilepsy Behav. 2023;144:109210. https://doi.org/10.1016/j.yebeh.2023.109210
Rosenberg EC, Louik J, Conway E, Devinsky O, Friedman D. Quality of Life in Childhood Epilepsy in pediatric patients enrolled in a prospective, open-label clinical study with cannabidiol. Epilepsia. 2017;58(8). https://doi.org/10.1111/epi.13815
Gaston TE, Szaflarski M, Hansen B, Bebin EM, Szaflarski JP, UAB CBD Program. Quality of life in adults enrolled in an open-label study of cannabidiol (CBD) for treatment-resistant epilepsy. Epilepsy Behav. 2019;95:10-17. https://doi.org/10.1016/j.yebeh.2019.03.035
Strickland JC, Jackson H, Schlienz NJ, Gurley BJ, Wiley JL, Martin CA, et al. Cross-sectional and longitudinal evaluation of cannabidiol (CBD) product use and health among people with epilepsy. Epilepsy Behav. 2021;122:108205. https://doi.org/10.1016/j.yebeh.2021.108205
Klotz KA, Schulze-Bonhage A, San Antonio-Arce V, Jacobs J. Cannabidiol for treatment of childhood epilepsy-A cross-sectional survey. Front Neurol. 2018;9:731. https://doi.org/10.3389/fneur.2018.00731
Ministerio de Salud Pública y Bienestar Social. Uso regulado de derivados del cannabis, como terapia alternativa [Internet]. Asunción: MSPBS; s. f. Disponible en: https://www.mspbs.gov.py/portal/12097/uso-regulado-de-derivados-del-cannabis-como-terapia-alternativa.html
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