Experiences Reported by People with Epilepsy During Antiseizure Medication Shortages in the UK: A Cross-Sectional Survey

Background: Medication shortages have become increasingly common in the UK. However, there is limited evidence regarding the experiences of people with epilepsy and their caregivers during these shortages. The aim of this study is to explore the extent and impact of ASM shortages on people with epilepsy and their caregivers across the UK.

Methods: A cross-sectional online survey was distributed between January and April, 2024 by epilepsy charities. Participants included people with epilepsy and caregivers. The survey collected demographic information, types of ASM respondents were prescribed, experiences of shortages, and the impact of shortages. Data were analysed descriptively, and subgroup analyses were conducted by medication type.

Results: A total of 1549 responded, of whom 1312 were people with epilepsy and their carers who were included in the analysis with a mean age of 43 years. A total of 941 respondents (71.7%) reported difficulty obtaining their prescribed ASM in the past year. Shortages were most frequently reported for sodium valproate (60.8%), lamotrigine (65.2%), carbamazepine (92.6%), clobazam (82.6%), topiramate (81.5%), zonisamide (74.0%), levetiracetam (62.8%), lacosamide (71.0%), and brivaracetam (70.5%). A total of 529 (40.4%) of the participants reported that stress and/or anxiety caused by medication shortages was associated with recurrent seizures. We did not ask whether patients missed medications because of these difficulties.

Conclusions: ASM shortages are a widespread issue for people with epilepsy in the UK, leading to treatment disruptions and psychological distress. Addressing supply change limitations and identifying effective approaches to preventing the substitution of ASMs brands by clinicians may potentially reduce this problem.