Experiences of COVID-19 in an Australian community cohort of adults with epilepsy

•More than 60 percent of those with epilepsy (PWE) contracted COVID-19.•For some there were problems in accessing GPs, healthcare and medicines.•PWE with these problems had lower Quality of Life.•Only small numbers were unvaccinated, lower than for the national population.•To understand pandemic effects on PWE the social dimension needs investigating. A number of studies have been conducted on the effects of the COVID-19 pandemic on people with epilepsy (PWE), some showing increased seizures, poorer psychosocial states, and reductions in Quality of Life (QoL). During the latter stages of COVID-19, well before the UN declared an end to the state of emergency, our study was conducted in Australia of a sample of women and men ≥ 18 years. The study was based on Wave 6 of the Australian Epilepsy Longitudinal Study (AELS). It used mixed methods. Two main scales were used in the study, the QOLIE-31 for QoL and the MOS-8 for social support. The quantitative component of the study looked at QoL in relation to COVID-19 and found no QoL differences in those who contracted the virus. However, there was significantly lower QoL in those having difficulties in seeing a GP, for those with limited access to healthcare, and for those who had problems in gaining ASMs (anti-seizure medicines) and/or other medicines and being unvaccinated. Being younger and living in rental accommodation were most likely significant contributing factors. Those not being vaccinated were less than the proportion in the whole national population., The qualitative component focussed on reasons for being vaccinated or not. Overall, the responses to the question “Were you vaccinated?” demonstrated that people made informed decisions on vaccinations, taking into account their own health as well as protecting family and public health considerations.