The perceived impact of COVID-19 and associated restrictions on young people with epilepsy in the UK: Young people and parent survey

Objective: To garner the views and experiences of young people with epilepsy and caregivers regarding the impact of the COVID-19 pandemic and subsequent restrictions in the UK Methods: An online survey was used to explore the views of young people (n=71) with epilepsy and caregivers (n=127) between 4th and 28th June 2020 It included sections on the impact of the COVID-19 pandemic and associated restrictions on the child's epilepsy and on child and caregiver wellbeing Results: One in 3 young people and one in four caregivers reported that the young person's seizures had increased during lockdown;only 7% of parents and 10% of young people reported a decrease Half of young people reported that they were more reluctant to go to hospital for appointments The majority of young people reported their sleep (73%), mood (64%) and levels of physical activity (53%) had deteriorated However, 46% reported there had been positive aspects to the restrictions (eg, spending more time with family) 19% of parents reported difficulties getting their child's medication whilst 25% reported their child had clinical procedures/investigations (such as EEG/MRI/-surgery) cancelled during restrictions Caregivers reported that their child's mood (60%), sleep (65%) and behaviour (50%) had deteriorated during the restrictions The majority of caregivers experienced increases in stress (70%) anxiety (66%) and difficulties with sleep (58%) Epilepsy nurses, online support groups/charity websites were seen as the most helpful supports for both young people and parents/carers during the restrictions Conclusions: Survey results indicate that the pandemic and associated restrictions have had a negative impact on young people with epilepsy Perceived increases in seizures and reluctance to go to hospital are likely to impact on epilepsy management The wider psychosocial impact is also likely to be significant with increases in child and parent mental health problems in an already vulnerable group