SUDEP Action

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US study findings: Pandemic has negative effect on mental health


Our reach in research is international, as demonstrated by our study into the impact of the COVID-19 pandemic on people with epilepsy in the US. This research forms part of the COVID-19 and Epilepsy (COV-E) global study, aiming to understand how COVID-19 has impacted medical care and wellbeing amongst people with epilepsy and their caregivers. This SUDEP Action funded study was supported by the Oxford NIHR Biomedical Research Centre.

Separate surveys for people with epilepsy and their caregivers were circulated from April 2020 to July 2021. We received 788 responses, including 559 (71%) from people with epilepsy.

Our findings included the following:

  • A third of respondents reported a change in their health or in the health of the person they care for.
  • 27% reported issues related to worsening mental health.
  • Less than half of respondents received counselling on mental health and stress.
  • Less than half of people with epilepsy reported having discussions with their healthcare providers about sleep or anti-seizure medications (ASMs) and potential side effects, while a larger proportion of caregivers (81%) reported having had discussions with healthcare providers on the same topics.
  • More people with epilepsy and caregivers reported that COVID-19-related measures caused adverse impact on their health in the post-vaccine period than during the pre-vaccine period, citing mental health issues as the primary reason.

The findings of the study indicate that the impact of the COVID-19 pandemic in the US on people with epilepsy is multifaceted with the pandemic having a negative effect on mental health and self-management. Healthcare providers must be vigilant for increased emotional distress and consider the importance of effective counselling to diminish risks related to exacerbated treatment gaps.

In the evolving US COVID-19 landscape, the barriers to healthcare and communication that initially resulted from social restrictions and resources reallocations may be replaced or augmented by changing insurance coverage. Our findings suggest that removing the mitigations that were initially placed, such as expanded healthcare coverage and telehealth waivers, may have adverse consequences and create additional hindrances to accessing healthcare.

Read the full report here

Find out how this compares to our UK findings by reading our Lives Cut Short Report: