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.
Competing Interest StatementThe authors have declared no competing interest.
Funding StatementThis study did not receive any funding
Author DeclarationsI confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.
Yes
The details of the IRB/oversight body that provided approval or exemption for the research described are given below:
Royal Free London NHS Foundation Trust Clinical Governance board
I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.
Yes
I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).
Yes
I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.
Yes
Data AvailabilityAll data produced in the present study are available upon reasonable request to the authors
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