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Global survey on disruption and mitigation of neurological services during COVID-19: the perspective of global international neurological patients and scientific associations

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Background The COVID-19 pandemic outbreak has dramatically disrupted healthcare systems. Two rapid WHO pulse surveys studied disruptions in mental health services, but did not particularly focus on neurology. Here, a global survey was conducted and addresses the impact of the pandemic on neurology services. Methods A cross-sectional study was carried out in which 34 international neurological associations were asked to distribute the survey to national associations. The responses represented the national situation, in November–December 2020, with regard to the main disrupted neurological services, reasons and the mitigation strategies implemented as well as the disruption on training of residents and on neurological research. A comparison with the situation in February–April 2020, first pandemic wave, was also requested. Findings 54 completed surveys came from 43 countries covering all the 6 WHO regions. Overall, neurological services disruption was reported as mild by 26%, moderate by 30%, complete by 13% of associations. The most affected services were cross-sectoral neurological services (57%) and neurorehabilitation (56%). The second wave of the pandemic, however, was associated with the improvement of service provision for diagnostics services (44%) and for neurorehabilitation (41%). Governmental directives were the major cause of services’ disruption (56%). Mitigation strategies were mostly established through telemedicine (48%). Almost half of respondents reported a significant impact on neurological research (48%) and educational activities (60%). Most associations (67%) were not involved in decision making for neurological patients’ issues by their national government. Interpretation The COVID-19 pandemic affects neurological services and raises the universal need for the development of neurological health care at the policy, systems and services levels. A global national plan on mitigation strategies for disruption of neurological services during pandemic situations should be established and neurological scientific and patients associations should get involved in decision making.
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Vol:.(1234567890)
Journal of Neurology (2022) 269:26–38
https://doi.org/10.1007/s00415-021-10641-3
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ORIGINAL COMMUNICATION
Global survey ondisruption andmitigation ofneurological services
duringCOVID‑19: theperspective ofglobal international neurological
patients andscientific associations
ChahnezCharTriki1 · MatildeLeonardi2 · SalmaZouariMallouli1· MartinaCacciatore2·
KimberlyCoardKarlshoej3· FrancescaGiuliaMagnani2· CharlesR.Newton4 · AndreaPilotto5 · DeannaSaylor6·
EricaWestenberg7 · DonnaWalsh8 · AndreaSylviaWinkler7,9· KiranT.Thakur10 · NjidekaU.Okubadejo11 ·
DavidGarcia‑Azorin12
Received: 28 May 2021 / Accepted: 2 June 2021 / Published online: 11 June 2021
© Springer-Verlag GmbH Germany, part of Springer Nature 2021
Abstract
Background The COVID-19 pandemic outbreak has dramatically disrupted healthcare systems. Two rapid WHO pulse
surveys studied disruptions in mental health services, but did not particularly focus on neurology. Here, a global survey was
conducted and addresses the impact of the pandemic on neurology services.
Methods A cross-sectional study was carried out in which 34 international neurological associations were asked to distribute
the survey to national associations. The responses represented the national situation, in November–December 2020, with
regard to the main disrupted neurological services, reasons and the mitigation strategies implemented as well as the disrup-
tion on training of residents and on neurological research. A comparison with the situation in February–April 2020, first
pandemic wave, was also requested.
Findings 54 completed surveys came from 43 countries covering all the 6 WHO regions. Overall, neurological services
disruption was reported as mild by 26%, moderate by 30%, complete by 13% of associations. The most affected services
were cross-sectoral neurological services (57%) and neurorehabilitation (56%). The second wave of the pandemic, however,
was associated with the improvement of service provision for diagnostics services (44%) and for neurorehabilitation (41%).
Governmental directives were the major cause of services’ disruption (56%). Mitigation strategies were mostly established
through telemedicine (48%). Almost half of respondents reported a significant impact on neurological research (48%) and
educational activities (60%). Most associations (67%) were not involved in decision making for neurological patients’ issues
by their national government.
Interpretation The COVID-19 pandemic affects neurological services and raises the universal need for the development
of neurological health care at the policy, systems and services levels. A global national plan on mitigation strategies for
disruption of neurological services during pandemic situations should be established and neurological scientific and patients
associations should get involved in decision making.
Keywords Neurological services· COVID-19· Neurology· Health services administration· Policies
Background
The severe acute respiratory syndrome Coronavirus 2
(SARS-CoV-2) has been responsible for a 2019 Coronavirus
disease (COVID-19) pandemic with a global burden of up to
163,869,893 confirmed cases of COVID-19 and 3,398,302
deaths as of May 2021 [3]. These large numbers, however,
reflect only a small perceptible part of the total impact of
COVID-19 on healthcare systems and services. COVID-19
presents all countries with an agonizing trade-off between
Shared co-authorship: Chahnez Charfi Triki and Matilde Leonardi
contributed equally to this work.
Chahnez Charfi Triki and Matilde Leonardi are the Co-chairs
of the Essential Health Services Group-WHO Neuro COVID19
Forum.
* Matilde Leonardi
Matilde.leonardi@istituto-besta.it
Extended author information available on the last page of the article
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... Our findings are in line with a worldwide WHO survey of international neurological patient and scientific organizations that examined the disruption and mitigation of neurological services during the outbreak [34]. The authors of this study detected that many educational activities (60%) and residency/PhD study programs in all neurology-related fields (39%) were reorganized due to the pandemic [34]. ...
... Our findings are in line with a worldwide WHO survey of international neurological patient and scientific organizations that examined the disruption and mitigation of neurological services during the outbreak [34]. The authors of this study detected that many educational activities (60%) and residency/PhD study programs in all neurology-related fields (39%) were reorganized due to the pandemic [34]. Additionally, 44% of participants stated that neurology residents were engaged in managing COVID-19 patients from the first wave, either in general COVID-19 wards or neuro-COVID-19 units. ...
... Additionally, 44% of participants stated that neurology residents were engaged in managing COVID-19 patients from the first wave, either in general COVID-19 wards or neuro-COVID-19 units. Participants also indicated that the outbreak impacted neurology research in terms of both funding distribution and research endeavors [34]. ...
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The COVID-19 pandemic had a significant impact on neurology training programs, leading to disruptions and changes that may have long-term implications for neurological education. The objective of this study was to investigate the impact of COVID-19 on neurological training programs, collecting available data relating to residents’ experience worldwide. We performed a systematic search of the literature published on PubMed from January 2020 to March 2023, including studies referring to quantitative analysis of residents’/trainees’ perspectives. Specifically, we included studies that examined how the pandemic has affected clinical and research activities, the use of telemedicine, the delivery of education and the psychological status of residents. Of the 95460 studies identified through database searching, 12 studies met the full criteria and underwent data extraction. In conclusion, the COVID-19 pandemic has had significant impacts on neurology training programs, highlighting the need for resilience and flexibility in medical education. Future research should focus on the long-term outcomes of these adaptations in the quality of neurology education and patient care.
... Although such policy was aimed to limit the spread of infection and protect the integrity of people, lack of awareness of associated measures necessary to overcome the pandemic crisis led to a huge bankruptcy in the care structures. Thus, besides affecting global population health, the outbreak of COVID-19 pandemic has also deeply affected access to healthcare services and led to several changes in daily clinical practice [4], [5]. There are several reports on effects of disruptions of health care services for patients with chronic disease, and children with neurological conditions were particularly exposed to both this life-threatening situation as well as to its consequences on health care delivery [6]- [9]. ...
... Since the start of the pandemic, several articles have presented and discussed the problems of continuity of care for neurological pathologies in children and adults. These studies are mostly reporting the causes of services' disruptions and the means of their mitigation from the point of view of health professionals or scientific and patients' associations [4]- [6], [11]. ...
... This survey was intended to assess caregiver's standpoint about access to health care, their constraints and their approach faced with the collapse of essential health sectors resulting from governmental containment policy done in order to limit the pandemic spread. Since the pandemic outbreak and until nowadays, data on COVID-19 impact on healthcare delivery for individuals with neurological disorders came mostly from high income countries, from single countries and multiple counties studies [4], [5], [11]. According to another report recording data from the Eastern Mediterranean Region, investment in young peoples' mental health is extremely limited and could be critical in the post-COVID-19 era [13]. ...
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To record the experience of caregivers for neurologically impaired children during the lockdown periods. Data from 286 children's caregivers were collected through an administered questionnaire to record: access to care services during the lockdown periods, causes underlying loss of access to care, mitigations adopted by caregivers and patients’ outcomes. The mean age of children was 8.11 years-old and sex ratio (F/M) was 0.66. They were mainly followed-up for epilepsy or epileptic encephalopathy (53%) and cerebral palsy (21%). During the lockdown periods, caregivers reported that 45% of children had no access to healthcare majorly for neurorehabilitation (76.7%) and medicines (70.7%). Most caregivers (36%) related limitations in access to fear from catching the virus. The majority resorted to continuation of the same treatment via primary healthcare facilities (41%) and postponement of their appointments (24%). Our results show that access to healthcare for children with neurological disorders was deeply disrupted during the COVID-19 pandemic. The already precarious health systems’ infrastructures might have been the main causes for this and should be thus considered in the health policy and planing.
... On the other hand, Consolidated Framework for Implementation Research (CFIR) (Damschroder et al., 2022), while also not specifically designed for public health emergencies, provides a comprehensive understanding of implementation barriers and facilitators. Evidence during the COVID-19 pandemic shows that healthcare services struggled to adapt their healthcare services delivery globally (World Health Organisation, 2020b) and the struggle persisted (Triki et al., 2022;World Health Organisation, 2021b). Identified barriers included limited evidence to support intervention implementation (Biswas et al., 2021), inadequate readiness in terms of staff training and resources (Barney et al., 2020;Dhala et al., 2020;Rafieepour et al., 2021), and finance (Patel & Douglas-Moore, 2020). ...
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Rapid adaptation of healthcare services during public health emergencies is key in ensuring continuous delivery of essential healthcare services. However, challenges associated with rapid adaptation can lead to disruptions in care delivery, impacting responses to population healthcare needs. To prepare for a prompt future response, it is important to identify and understand the barriers and facilitators influencing rapid adaptation efforts. A systematic integrative review was conducted between March and October 2022, with five healthcare-related databases searched from 2012. Weekly auto-alerts continued until March 2023. The Mixed-Methods Appraisal Tool was used for quality assessment and data extraction conducted using the Consolidated Framework for Implementation Research. Seventeen eligible studies utilised quantitative (10/17, 59%), mixed-methods (4/17, 23%) or qualitative designs (3/17, 18%). Most rapid adaptation in healthcare service delivery happened within 3 months after the World Health Organisation declared Coronavirus disease a pandemic (13/17, 76%), with telehealth being the key rapid adaptation that occurred. Inner setting and process factors served as both barriers and facilitators. Two additional factors not present in the consolidated framework, namely: (1) emergency command and control at the healthcare level and (2) acceptability and resilience, were identified as facilitators to rapid adaptation. This systematic integrative review underscores that while healthcare services rapidly adapted within the initial 3 months of the pandemic, inadequate readiness may have hindered their capacity to respond inclusively, potentially impacting on the sustainability of adapted services. Addressing these issues will support greater preparation for public health emergencies.
... The COVID-19 pandemic has led to suboptimal care for individuals at risk of or living with neurodegenerative diseases [1,2]. There were notable declines in the incidence of registered dementia and all-cause parkinsonism diagnoses, as well as related hospital admissions, compared to pre-pandemic levels [3][4][5][6][7][8]. ...
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Background A sustainable pandemic preparedness strategy is essential to ensure equitable access to healthcare for individuals with neurodegenerative diseases. Moreover, it is vital to provide clinicians and researchers in the neurodegenerative disease fields with resources and infrastructure to ensure continuity of their work during a (health) crisis. Methods We established an international collaboration between researchers, clinicians, and patient representatives from the Netherlands, Poland, and the United Kingdom. We co-created a pandemic preparedness plan primarily informed by examples from those affected by or working in the field of Parkinson’s disease, with potential application to other neurodegenerative diseases or the general population. This plan builds upon insights and experiences from four population-based studies during the COVID-19 pandemic. Between March and November 2023, we organised two hybrid meetings in Bristol (United Kingdom) and Rotterdam (the Netherlands), and two online meetings. Results Research recommendations included three core factors in questionnaire design during health crises: 1) using existing, validated questions, 2) questionnaire adaptability and flexibility, and 3) testing within and outside the research group. Additionally, we addressed burden of participation, and we advocated for robust data sharing practices, underlining the importance of regulatory measures extending beyond the COVID-19 pandemic. We also shared clinical perspectives, including strategies to mitigate social isolation; challenges in virtual versus in-person consultations; and systemic changes to recognise and prevent moral injury in healthcare professionals. Conclusion In this pandemic preparedness plan, we provide research and clinical recommendations tailored to the field of Parkinson’s disease, with broader relevance to other neurodegenerative diseases and the general population. This establishes an essential framework for setting up new studies and safeguarding research and clinical practices when a new pandemic or other (health) crisis emerges. Graphical Abstract
... Recent studies highlighted that the burden of neurological diseases has increased globally, especially in LMICs [13], and the scenario is expected to worsen due to the epidemiological transition that is taking place in these countries [10,11]. In recent years, COVID-19 has shown the dangerous health circumstances of vulnerable and medically underserved populations around the world and continues to disproportionately affect racial/ethnic minority populations regarding infection and mortality rates [14][15][16][17]. The pandemic first, and long COVID-19 nowadays, impact a large part of the global population as reported by the recent estimates of the Global Burden of Disease [18,19], increasing the burden as well as exacerbating the already existing inequities of access to services and treatments [2]. ...
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Background and purpose Health disparities and inequities are an important and too long overlooked public health concern worldwide. These differences in health and health care can affect people with any disease, including neurological disorders. The aim of this systematic review is to provide an updated overview of the main health inequities faced by neurological patients worldwide, to plan valuable interventions. Methods Main databases were searched systematically. Quality was assessed with the Mixed Methods Appraisal Tool. This review followed the standard guidelines of Preferred Reporting Items for Systematic Reviews and Meta‐Analyses. Results A total of 1797 studies were obtained, of which 49 studies were included in the final round and subjected to quality appraisal. Quality assessment yielded scores ranging from 20% to 100%. The results were divided based on the nature of inequities: (i) socioeconomic disadvantage (n = 25); and (ii) access to care, treatment, and services inequities (n = 24). Most studies were conducted in high income counties (n = 46, 93.8%) and reported health inequities in persons with cerebrovascular diseases, especially stroke (n = 20, 40.8%), followed by multiple sclerosis (n = 8, 16.3%) and neurodegenerative disorders (n = 6, 12.2%). Conclusions Racial and ethnic discrimination, economic issues, differences in disease management, educational level, and place of residence are the main inequities reported by neurological patients. The USA dominates the research panorama (n = 36, 73.4%), highlighting the need for more studies that cover other geopolitical contexts. Improving population health means improving health for everyone; however, historically disadvantaged groups continue to trail dramatically behind, and actions are needed to reduce the inequities.
... According to one research study, massive amounts of people faced emotional and psychological shock at this time, even the cases of divorce increased in some countries [4]. People got tired more easily after performing small tasks, and there was the condition of mental exacerbation due to loss of loved ones [5]. This caused conflict at home which exacerbated mental disturbance [6]. ...
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... The neurological manifestations of COVID-19 and complications of the SARS-CoV-2 vaccines further emphasize the importance of neurologists in the pandemic [18,19]. A worldwide survey conducted at the end of the year 2020 reported a substantial disruption in care due to the restriction of neurological services [20]. The resource allocation often prioritized COVID -19 prevention and care at the cost of nonurgent services for patients with subacute symptoms and chronic neurological disorders. ...
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Background and Purpose The COVID‐19 pandemic has significantly impacted health systems worldwide. Here, we assessed the pandemic's impact on clinical service, curricular training, and financial burden from a neurological viewpoint during the enforced lockdown periods and the assumed recovery by 2023. Methods An online 18‐item survey was conducted by the European Academy of Neurology (EAN) NeuroCOVID‐19 Task Force among the EAN community. The survey was online between February and March 2023. Questions related to general, demographic, clinical, work, education, and economic aspects. Results We collected 430 responses from 79 countries. Most health care professionals were aged 35–44 years, with >15 years of work experience. The key findings of their observations were as follows. (i) Clinical services were cut back in all neurological subspecialties during the most restrictive COVID‐19 lockdown period. The most affected neurological subspecialties were services for patients with dementia, and neuromuscular and movement disorders. The levels of reduction and the pace of recovery were distinct for acute emergencies and in‐ and outpatient care. Recovery was slow for sleep medicine, autonomic nervous system disorders, neurorehabilitation, and dementia care. (ii) Student and residency rotations and grand rounds were reorganized, and congresses were converted into a virtual format. Conferences are partly maintained in a hybrid format. (iii) Affordability of neurological care and medication shortage are emerging issues. Conclusions Recovery of neurological services up to spring 2023 has been incomplete following substantial disruption of neurological care, medical education, and health economics in the wake of the COVID‐19 pandemic. The continued limitations for the delivery of neurological care threaten brain health and call for action on a global scale.
... Attempt to mitigate this disruption was mainly through the implementation of telemedicine [39], and a large number of those who were able to utilize telemedicine did find it a useful alternative to in-person visits, at times noting that without this option they would have missed medical care [24]. Patients who were able to access care and continue on their preventative treatments were found to have better outcomes. ...
Chapter
Since the COVID-19 pandemic, healthcare systems around the world have faced a huge challenge in managing patients with chronic diseases. Patients with migraine have also been vulnerable to inadequate medical care during the pandemic. They have experienced heightened levels of psychosocial stress, social isolation, and disruption of sleep and dietary habits. Due to several COVID-19-specific concerns, patients with migraine have suffered from losing their earlier therapeutic response, especially with the cancellation of face-to-face visits and procedural treatments. This chapter discusses the challenges and course of migraine throughout the pandemic.KeywordsCOVID-19Coronavirus disease 2019SARS-CoV-2MigraineHeadache
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Background: Corona virus disease (COVID-19) was declared a pandemic by the World Health Organization in March 2020. This has affected service delivery among all medical disciplines in India including neurorehabilitation services. Aims and Objectives: The aims and objectives of the study were to assess the effect of COVID-19 pandemic on neurorehabilitation services across India. Methodology: A prospective nationwide survey study was undertaken by the Indian Federation of Neurorehabilitation during the pandemic. A questionnaire was prepared using Google forms software consisting of four sections: demography, neurorehabilitation practice before COVID-19 pandemic, neurorehabilitation practice during COVID-19 pandemic, and continuing medical education during COVID-19 pandemic. Results: Responses (872) were received from neurorehabilitation professionals across the country out of which 2.2% professionals did not give consent for participating in the survey. Participants (36.6%) were practicing traditional or independent referral basis rehabilitation, while 63.4% participants were practicing multidisciplinary rehabilitation. On an average, respective units were conducting 500–750 therapy sessions per month. Majority of the rehabilitation units in India lacked a physiatrist, rehabilitation nurse, music therapist, cognitive therapist, and urologist. Approximately 80% of the rehabilitation units have the basic rehabilitation modalities and advance technology was present in only 20% of the rehabilitation units. During COVID-19 pandemic, 19.5% centers were providing elective services, 50.3% emergency services, 15.6% new outpatient services, and 22.7% were providing follow-up outpatient services. Centers (51.5%) were providing telerehabilitation services for neurological conditions during the times of COVID-19 pandemic. Professionals (61.1%) providing telerehabilitation were working from home. Among the patients who needed neurorehabilitation, 28% were doing their exercises independently, 31% were supervised by caregivers, 17% were supervised by therapists, and 24% were not receiving any therapy. Participants (95.5%) wanted to receive more training in the field of neurorehabilitation. The participants utilized webinars (71%), online courses (22%), case discussion forums (19%), panel discussions (13%), and literature search (8%) during COVID-19 pandemic to continue education. Conclusion: The study reflects the situation of neurorehabilitation service delivery in India during the pandemic as the respondents were from all parts of the country and included most components of the neurorehabilitation team. Neurorehabilitation services were severely affected across India during the COVID-19 pandemic. Tele-neurorehabilitation has emerged as a new service delivery model during the pandemic. Online means of education has emerged as the primary source of continuing medical education during the pandemic.
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Background: The private medical sector is a resource that must be estimated for efficient inclusion into public healthcare during pandemics. Methods: A survey was conducted among private healthcare workers to ascertain their views on the potential resources that can be accessed from the private sector and methods to do the same. Results: There were 213 respondents, 80% of them being doctors. Nearly half (47.4%) felt that the contribution from the private medical sector has been suboptimal. Areas suggested for improved contributions by the private sector related to patient care (71.8%) and provision of equipment (62.4%), with fewer expectations (39.9%) on the research front. Another area of deemed support was maintaining continuity of care for non-COVID patients using virtual consultation services (77.4%), tele-consultation being the preferred option (60%). 58.2% felt that the Government had not involved the private sector adequately; and 45.1% felt they should be part of policy-making. Conclusion: A streamlined pathway to facilitate the private sector to join hands with the public sector for a national cause is the need of the hour. Through our study, we have identified gaps in the current contribution by the private sector and identified areas in which they could contribute, by their own admission.
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The coronavirus 2019 disease (COVID-19) is deepening the inequity and injustice among the vulnerable communities. The current study aims to present an overview of the impact of COVID-19 on equity and social justice with a focus on vulnerable communities. Vulnerable communities include, but not limited to, healthcare workers, those from lower socioeconomic backgrounds, ethnic or minority groups, immigrants or refugees, justice-involved populations, and people suffering from chronic diseases or mental illness. The implications of COVID-19 on these communities and systemic disparities beyond the current pandemic are also discussed. People from vulnerable communities' experience disproportionately adverse impacts of COVID-19. COVID-19 has exacerbated systemic disparities and its long-term negative impact on these populations foretell an impending crisis that could prevail beyond the COVID-19 era. It is onerous that systemic issues be addressed and efforts to build inclusive and sustainable societies be pursued to ensure the provision of universal healthcare and justice for all. Without these reinforcements, we would not only compromise the vulnerable communities but also severely limit our preparedness and response to a future pandemic.
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Objectives The COVID-19 pandemic enforced an almost complete switch from face-to-face clinical work to tele-neurology. This study explores neurologists’ perceptions of telephone and videophone remote consultations. Methods Semi-structured interviews were conducted with neurologists and a GP with a specialist interest (n = 22). Interviews were conducted remotely via Zoom®, audio-recorded, transcribed verbatim and analysed using the principles of thematic analysis. Results Four main themes emerged: ‘unknown unknowns (risks / uncertainties)’, ‘better service’, ‘challenges’, and ‘beyond the pandemic’. Thematic saturation was achieved by interview 19. Participants highlighted a number of benefits of remote consultations but over 80% also complained of a reduction in work satisfaction. Conclusion The sudden introduction of tele-neurology is unlikely to be fully reversed when pandemic-related restrictions have been lifted. However, this study confirms tele-neurology cannot completely replace face-to-face consultations. Some patient groups and consultation types require direct contact. Moreover, significant administrative and infrastructural investment will be required to develop the full potential of tele-neurology. Practice implications Tele-medicine is capable of improving access and efficiency of specialist neurology services, but limited by lack of non-verbal communication and technical problems. It could enhance service provision with sufficient infrastructural and administrative investment, but may reduce neurologists’ job statisfaction.
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Background Academic physicians aim to provide clinical and surgical care to their patients while actively contributing to a growing body of scientific literature. The coronavirus disease 2019 (COVID-19) pandemic has resulted in procedural-based specialties across the United States witnessing a sharp decline in their clinical volume and surgical cases. Objective To assess the impact of COVID-19 on neurosurgical, stroke neurology, and neurointerventional academic productivity. Methods The study compared the neurosurgical, stroke neurology, and neurointerventional academic output during the pandemic lockdown with the same time period in previous years. Editors from a sample of neurosurgical, stroke neurology, and neurointerventional journals provided the total number of original manuscript submissions, broken down by months, from the year 2016 to 2020. Manuscript submission was used as a surrogate metric for academic productivity. Results 8 journals were represented. The aggregated data from all eight journals as a whole showed that a combined average increase of 42.3% was observed on original submissions for 2020. As the average yearly percent increase using the 2016–2019 data for each journal exhibited a combined average increase of 11.2%, the rise in the yearly increase for 2020 in comparison was nearly fourfold. For the same journals in the same time period, the average percent of COVID-19 related publications from January to June of 2020 was 6.87%. Conclusion There was a momentous increase in the number of original submissions for the year 2020, and its effects were uniformly experienced across all of our represented journals.