Jane Hanna, Faye Waddams, Sarah Jones, Rachel Arkell, Heather Angus-Leppan
{"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":"29 1","pages":""},"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}
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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.
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