患者的声音:丙戊酸钠、托吡酯和 MHRA 法规

Jane Hanna, Faye Waddams, Sarah Jones, Rachel Arkell, Heather Angus-Leppan
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引用次数: 0

摘要

丙戊酸钠和托吡酯的使用越来越多地受到政府法规的限制,如英国药品管理局(MHRA)的法规。对受这些限制影响的癫痫患者及其家人的看法研究甚少。本定性研究探讨了 19 名癫痫患者及其对这些限制的看法,并从避免丙戊酸钠或托吡酯的直接损害(包括 SUDEP)、错失良机和信仰体系的破坏等方面研究了这些看法的主题结果。此外,还提出了使法规与人权和真正的知情决策相一致的建议。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The patient voice: valproate, topiramate and MHRA regulation
Valproate and topiramate use are increasingly restricted by government regulations, such as those of the MHRA. The views of people with epilepsy and their families affected by these have been little studied. This qualitative study examines 19 people with epilepsy and their views on the restrictions, and examines the thematic outcomes of these views – in terms of direct damage of avoiding valproate or topiramate (including SUDEP), missed opportunities and disruption of belief systems. Recommendations to align the regulations to human rights and true informed decision making are made.
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