key: cord-0769958-tgklvy1x authors: Bodini, Benedetta; Moro, Elena; Jaarsma, Joke; Cunningham, Elizabeth; Sellner, Johann; Walsh, Donna title: Lessons learned from people with neurological diseases at the time of COVID‐19: The EFNA‐EAN survey date: 2021-10-05 journal: Eur J Neurol DOI: 10.1111/ene.15087 sha: c0271b522927dd565b151814e7713308a550cb2f doc_id: 769958 cord_uid: tgklvy1x BACKGROUND AND PURPOSE: The European Federation of Neurological Associations (EFNA), in partnership with the NeuroCOVID‐19 taskforce of the European Academy of Neurology (EAN), has investigated the impact of the first wave of the COVID‐19 pandemic on individuals with neurological diseases, as well as the hopes and fears of these patients about the post‐pandemic phase. METHODS: An EFNA‐EAN survey was available online to any person living with a neurological disorder in Europe. It consisted of 18 items concerning the impact of the first wave of the COVID‐19 pandemic on the medical care of people with neurological disorders, and the hopes and fears of these individuals regarding the post‐pandemic phase. RESULTS: 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 well‐being (23.1%), and facing delays in clinical trials with disinvestment in neuroscience research (13.1%). CONCLUSIONS: Despite the great efforts of health services to cope with the first wave of the COVID‐19 pandemic, individuals with neurological conditions 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. The Coronavirus-19 (COVID-19) pandemic, first identified in December 2019 in Wuhan, China, spread to Europe in early 2020 [1] . The COVID-19 pandemic is posing an unprecedented challenge to people living with neurological diseases, who have seen their access to treatment and care as well as their healthcare system priorities entirely transformed by the health crisis [2] [3] [4] . The standard of care for neurological patients includes regular in-person clinic visits, laboratory and/or radiological monitoring, and multidisciplinary care, all of which have been substantially disrupted during the pandemic. Since healthcare systems in Europe are organized at individual national levels, different strategies have been implemented by each country to minimize the impact of the health crisis [5] . Of note, in most European countries the government provides healthcare funding for low-income individuals, and this welfare system is associated with tightly regulated, competing private health insurance companies to support healthcare expenses. and (iii) which improvements the patients felt to be essential to ensure that health service delivery in the post-pandemic phase meets the critical needs of the neurology patient community. The EFNA-EAN survey was open to any individual with a neurological disorder living in Europe. Participants were informed that they were providing their informed consent by submitting the survey. The questionnaire comprised 18 items, divided into three main sections: (i) general information (five items); (ii) medical care and implications for neurological patients during the first wave of the COVID-19 pandemic (10 items); (iii) hopes and fears of patients about the postpandemic phase (three items; Table 1 Data analysis was conducted using descriptive statistics (mean and standard deviation [SD]) for continuous variables and percentages for categorical variables. A total of 443 European individuals with a neurological disease participated in the survey. This survey explored the impact of the first wave of the COVID-19 pandemic on neurological patient communities in Europe, and investigated the hopes and fears of individuals with neurological disease in regard to the post-pandemic phase. The collected data clearly highlight that the first wave of the pandemic had a profound, and often negative, impact on the overall care of neurological patients. In particular, for more than a third of respondents, access to care was either delayed or stopped altogether during the first wave. Almost half felt that the overall care of their neurological disease during the first phase of the pandemic was not appropriate, due to significant delays in accessing medical care and a significant lack of involvement of patients in decisions regarding changes in their treatment and care plans. Our data suggest that, despite the great efforts of health services to respond to the needs of people with chronic medical conditions during the first phase of the crisis, neurological patients felt left behind. In contrast to the general consensus on issues of medical as- Our findings indicate that healthcare services should build on the experience gained during the early waves of the pandemic to meet the needs expressed by the neurological patient community [11] [12] [13] . In particular, video appointments and regular phone calls could be added to face-to-face consultations to increase contacts with healthcare teams while minimizing virus exposure [14] . Despite these limitations, from this study it may be concluded that individuals with neurological diseases have identified a negative impact of the pandemic on their care. Therefore, we argue that people living with neurological disorders should be included amongst vulnerable and priority groups during health crises, and their medical needs and mental well-being should be prioritized. Moreover, the views of people with neurological diseases should be considered at the forefront of post-COVID recovery planning. The data that support the findings of this study are available from the corresponding author upon reasonable request. https://orcid.org/0000-0001-8010-1220 Elena Moro https://orcid.org/0000-0002-7968-5908 Johann Sellner https://orcid.org/0000-0001-8749-5533 First cases of coronavirus disease 2019 (COVID-19) in the WHO European Region Impact of COVID-19 on the lives and psychosocial well-being of persons with epilepsy during the third trimester of the pandemic: results from an international, online survey The impact of COVID-19 and social distancing on people with Parkinson's disease: a survey study Impact of COVID-19 on multiple sclerosis care and management: results from the European Committee for Treatment and Research in Multiple Sclerosis survey Neurology and COVID-19 The international European Academy of Neurology survey on neurological symptoms in patients with COVID-19 infection EAN consensus statement for management of patients with neurological diseases during the COVID-19 pandemic The European Academy of Neurology COVID-19 registry (ENERGY): an international instrument for surveillance of neurological complications in patients with COVID-19 Primary prevention of COVID-19: advocacy for vaccination from a neurological perspective A plea for equitable global access to COVID-19 diagnostics, vaccination and therapy: the NeuroCOVID-19 Task Force of the European Academy of Neurology The effects of coronavirus disease 2019 (COVID-19) pandemic on people with epilepsy (PwE): an online survey-based study Knowledge and perceptions of the COVID-19 pandemic among patients with myasthenia gravis COVID-19 pandemic and management of patients with chronic neurological conditions in low-middle income countries: the added burden Experiences of telemedicine in neurological out-patient clinics during the COVID-19 pandemic Lessons learned from people with neurological diseases at the time of COVID-19: The EFNA-EAN survey