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Caregivers' Perspectives on the Impact of Cannabidiol (CBD) Treatment for Dravet and Lennox-Gastaut Syndromes: A Multinational Qualitative Study.
Journal of Child Neurology ( IF 1.9 ) Pub Date : 2023-07-16 , DOI: 10.1177/08830738231185241
Jade Marshall 1 , Hanna Skrobanski 2 , Lisa Moore-Ramdin 1 , Klaudia Kornalska 2 , Paul Swinburn 2 , Sally Bowditch 1
Affiliation  

OBJECTIVE To increase understanding of the impact of cannabidiol (CBD) on outcomes beyond seizure control among individuals with Dravet syndrome or Lennox-Gastaut syndrome. METHODS Qualitative interviews were conducted with caregivers of individuals with Dravet syndrome or Lennox-Gastaut syndrome treated with plant-derived, highly purified CBD medicine (Epidiolex in the USA; Epidyolex in Europe; 100 mg/mL oral solution). Symptoms and impacts of Dravet syndrome and Lennox-Gastaut syndrome on individuals were explored, as were the effects of CBD. Data were analyzed using thematic analysis. RESULTS Twenty-one caregivers of individuals with Dravet syndrome (n = 14) and Lennox-Gastaut syndrome (n = 7) aged 4-22 years participated. Health-related quality of life improvements associated with CBD included cognitive function, communication, behavior, mobility, and participation in daily activities. Seizure frequency reduction was commonly reported (n = 12), resulting in caregivers having greater freedom and family life being less disrupted. Adverse events were reported by 10 caregivers. CONCLUSION In addition to reduced seizure frequency, CBD may have a wide range of beneficial effects beyond seizure control that warrant further investigation.

中文翻译:

护理人员对大麻二酚 (CBD) 治疗 Dravet 和 Lennox-Gastaut 综合征影响的看法:一项多国定性研究。

目的 加深对大麻二酚 (CBD) 对 Dravet 综合征或 Lennox-Gastaut 综合征患者癫痫发作控制以外结果的影响的了解。方法对 Dravet 综合征或 Lennox-Gastaut 综合征患者的护理人员进行定性访谈,这些患者接受植物源性高纯度 CBD 药物(美国 Epidiolex;欧洲 Epidyolex;100 mg/mL 口服溶液)治疗。研究人员探讨了 Dravet 综合征和 Lennox-Gastaut 综合征的症状和对个体的影响,以及 CBD 的影响。使用主题分析对数据进行分析。结果 21 名年龄为 4-22 岁的 Dravet 综合征 (n = 14) 和 Lennox-Gastaut 综合征 (n = 7) 患者的护理人员参与了研究。与 CBD 相关的健康相关生活质量改善包括认知功能、沟通、行为、活动能力和日常活动参与。据报道,癫痫发作频率有所降低(n = 12),从而使护理人员拥有更大的自由度,家庭生活受到的干扰也更少。10 名护理人员报告了不良事件。结论 除了减少癫痫发作频率外,CBD 可能还具有超出控制癫痫发作的广泛有益作用,值得进一步研究。
更新日期:2023-07-16
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