Jane Hanna, Faye Waddams, Sarah Jones, Rachel Arkell, Heather Angus-Leppan
{"title":"患者的声音：丙戊酸钠、托吡酯和 MHRA 法规","authors":"Jane Hanna, Faye Waddams, Sarah Jones, Rachel Arkell, Heather Angus-Leppan","doi":"10.1101/2024.09.06.24313040","DOIUrl":null,"url":null,"abstract":"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.","PeriodicalId":501367,"journal":{"name":"medRxiv - Neurology","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2024-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The patient voice: valproate, topiramate and MHRA regulation\",\"authors\":\"Jane Hanna, Faye Waddams, Sarah Jones, Rachel Arkell, Heather Angus-Leppan\",\"doi\":\"10.1101/2024.09.06.24313040\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"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.\",\"PeriodicalId\":501367,\"journal\":{\"name\":\"medRxiv - Neurology\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-09-06\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"medRxiv - Neurology\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1101/2024.09.06.24313040\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"medRxiv - Neurology","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1101/2024.09.06.24313040","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
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.
京公网安备 11010802042870号
京ICP备2023020795号-1
分享
求助内容：
应助结果提醒方式：
扫码关注我们
