Abstracts

Rationale:
The disruption to healthcare and every-day routine during the COVID-19 pandemic could potentially associate with an increase in adverse outcomes in people with epilepsy (PWE). Accordingly, we launched a global study on PWE’s changing exposure to risk, to evaluate changes in patient well-being, epilepsy management and care during the crisis.
Method:
We have released online surveys for PWE, their carers and healthcare workers (HCW) in 11 languages. We are collecting data on the health demographics of PWE, their use of health services over the past 12 months, their awareness and engagement in risk behaviours and the impact of COVID-19 measures on their exposure to seizure risk. We are investigating specific risk factors including the quality and availability of healthcare, and lifestyle-associated risks including psychosocial well-being, sleep quality and alcohol consumption. These data are complemented by the perspectives from carers. Evaluation of HCWs provides additional insight into the delivery of epilepsy care during the COVID-19 pandemic. The study has Ethics Approval from the University of Oxford, UK.
Results:
The surveys remain live. As of June 24th 2020, we have received 921 responses from 40 countries (Figure 1). 48% were submitted by PWE (n=444); 27% by HCW (n=251) and 25% by carers of PWE (n=226). Changes to Healthcare Delivery - Prior to COVID-19, 10% of HCWs would perform reviews by phone for more than 25% of consultations (n=25). During COVID-19, a third of doctors used telecommunication for more than 75% of their consultations. When asked on their confidence in diagnosing epilepsy by telephone, 23% felt significantly less confident (n=53), 56% felt a little less confident (n=131), with 24% feeling just as, or more, confident (n=59). 68% of PWE stated that their consultation will be over telephone or video (n=112), with 37% saying that their next appointment will be in-person at a later date. 20% reported being unhappy with these changes, citing worries over the delay of procedures, uncertainty over future appointments, and concerns on epilepsy and COVID-19. 26% of respondents reported difficulties in finding help from epilepsy services. Changes in the Health of PWE - 34% of PWE reported changes in health. Of these, 89% reported increased mental strain (including stress, worry, anxiety and depression) (n=127); 33% reported a change in the number, type and length of seizures (n=47); 70% reported disrupted sleep (n=100), 12% reported increased alcohol consumption (n=17) and 4% reported increased usage of recreational drugs (n=6). Qualitative data highlighted concerns about comorbid conditions, difficulties in acquiring prescriptions, income loss and fatigue. Crucially, clinician-patient communication on these risks was also reported to be low (Figure 2).
Conclusion:
Preliminary data from our study indicate that a significant proportion of PWE are being exposed to increased risk during the COVID-19 pandemic. The information acquired will contribute towards improving current strategies for epilepsy care and inform methods for chronic disease management in this and future health emergencies.
Funding:
:This study was funded by SUDEP Action (registered charity 1164250 (England & Wales); SC047223 (Scotland)) and supported by the NIHR Oxford Biomedical Research Centre