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照顾者对大麻二酚 (CBD) 治疗德拉维特和 Lennox-Gastaut 综合征影响的看法:一项多国家定性研究。

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

机构信息

Jazz Pharmaceuticals, Inc, London, UK.

Acaster Lloyd Consulting Ltd, London, UK.

出版信息

J Child Neurol. 2023 May;38(6-7):394-406. doi: 10.1177/08830738231185241. Epub 2023 Jul 16.

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.

摘要

目的

提高对大麻二酚(CBD)对德雷维特综合征或 Lennox-Gastaut 综合征患者除控制癫痫发作以外的结果的影响的认识。

方法

对使用植物源性、高度纯化的 CBD 药物(美国的 Epidiolex;欧洲的 Epidyolex;100mg/mL 口服溶液)治疗的德雷维特综合征或 Lennox-Gastaut 综合征患者的照顾者进行了定性访谈。探讨了德雷维特综合征和 Lennox-Gastaut 综合征对患者的症状和影响,以及 CBD 的作用。使用主题分析对数据进行了分析。

结果

21 名年龄为 4-22 岁的德雷维特综合征(n=14)和 Lennox-Gastaut 综合征(n=7)患者的照顾者参与了研究。与 CBD 相关的健康相关生活质量的改善包括认知功能、沟通、行为、移动性和日常活动参与度。常见的报道是癫痫发作频率降低(n=12),导致照顾者有更多的自由,家庭生活受到的干扰减少。10 名照顾者报告了不良事件。

结论

除了减少癫痫发作频率外,CBD 可能具有广泛的有益影响,超出了控制癫痫发作的范围,值得进一步研究。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9031/10467005/8ae98cb432ab/10.1177_08830738231185241-fig1.jpg

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