The European Federation of Neurological Associations, in partnership with the NeuroCOVID-19 taskforce of the European Academy of Neurology, has investigated the impact of the first wave of the COVID-19 pandemic on patients with neurological diseases, as well as the hopes and fears of these patients about the post-pandemic phase. A EFNA-EAN survey was available online to any patient living with a neurological disorder in Europe. It consisted of 18 items concerning the impact of the first wave of COVID-19 pandemic on the medical care of neurological patients, and the hopes and fears of these patients regarding the post-pandemic phase. For 44.4% of the 443 survey participants, the overall care of their neurological disease during the pandemic was inappropriate. This perception was mainly due to significant delays in accessing medical care (25.7%), insufficiently reliable information received about the potential impact of COVID-19 on their neurological disease (49.6%), and a substantial lack of involvement in their disease management decisions (54.3%). Participants indicated that their major concerns for the post-pandemic phase were experiencing longer waiting times to see a specialist (24.1%), suffering from social isolation and deteriorating mental wellbeing (23.1%), and facing delays in clinical trials with disinvestment in neuroscience research (13.1%). The authors concluded that despite the great efforts of health services to cope with the first wave of the COVID-19 pandemic, neurological patients feel they have been left behind. These findings provide invaluable insights for improving the care of patients with neurological disorders in the further course of the COVID-19 pandemic.
Bodini B, Moro E, Jaarsma J, Cunningham E, Sellner J, Walsh D; EANcore COVID-19 Task Force. Lessons learned from patients with neurological diseases at the time of COVID-19: the EFNA-EAN survey. Eur J Neurol. 2021 Aug 30. doi: 10.1111/ene.15087.