Caregivers' Perspectives on the Impact of Cannabidiol (CBD) Treatment for Dravet and Lennox-Gastaut Syndromes: A Multinational Qualitative Study.

IF 1.6 4区医学 Q3 CLINICAL NEUROLOGY Journal of Child Neurology Pub Date : 2023-05-01 Epub Date: 2023-07-16 DOI:10.1177/08830738231185241

Jade Marshall, Hanna Skrobanski, Lisa Moore-Ramdin, Klaudia Kornalska, Paul Swinburn, Sally Bowditch

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Abstract

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.

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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之外的结果的影响的了解。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，这些患者使用植物来源的高纯度CBD药物（美国的Epidiolex；欧洲的Epidyolex；100 mg/mL口服溶液）。探讨了Dravet综合征和Lennox-Gastaut综合征对个体的症状和影响，以及CBD的影响。数据采用专题分析法进行分析。结果：21名Dravet综合征患者的护理人员（n = 14）和Lennox-Gastaut综合征（n = 7）年龄4-22岁。与CBD相关的健康相关的生活质量改善包括认知功能、沟通、行为、移动性和参与日常活动。癫痫发作频率降低是常见的报告（n = 12）从而使照顾者拥有更大的自由，家庭生活受到的干扰更少。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可能具有超出癫痫发作控制范围的广泛有益作用，值得进一步调查。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Child Neurology 医学-临床神经学

CiteScore

4.20

自引率

5.30%

发文量

111

审稿时长

3-6 weeks

期刊介绍： The Journal of Child Neurology (JCN) embraces peer-reviewed clinical and investigative studies from a wide-variety of neuroscience disciplines. Focusing on the needs of neurologic patients from birth to age 18 years, JCN covers topics ranging from assessment of new and changing therapies and procedures; diagnosis, evaluation, and management of neurologic, neuropsychiatric, and neurodevelopmental disorders; and pathophysiology of central nervous system diseases.