Figure - available from: Journal of Neurology
This content is subject to copyright. Terms and conditions apply.
Source publication
Background
The COVID-19 pandemic leads to disruptions of health services worldwide. To evaluate the particular impact on neurological services a rapid review was conducted.
Methods
Studies reporting the provision of neurological services during the pandemic and/or adopted mitigation strategies were included in this review. PubMed and World Health...
Similar publications
Objective
To assess implementation and to identify barriers and facilitators to implementation, sustainability and scalability of an implementation strategy to provide lay health workers (LHWs) with the knowledge, skills and tools needed to implement an intervention to support patient tuberculosis (TB) treatment adherence.
Design
Mixed-methods des...
Objectives
Compassion is a key indicator of quality care that is reportedly eroding from patients’ care experience. While the need to assess compassion is recognised, valid and reliable measures are lacking. This study developed and validated a clinically informed, psychometrically rigorous, patient-reported compassion measure.
Design
Data were co...
Objectives
The threat of a pandemic, over and above the disease itself, may have significant and broad effects on a healthcare system. We aimed to describe the impact of the SARS-CoV-2 pandemic (during a relatively low transmission period) and associated societal restrictions on presentations, admissions and outpatient visits.
Design
We compared h...
Citations
... Alongside these changes in children and youth with special needs, families had a difficult time managing their children's symptoms during the COVID-19 pandemic (Gillespie-Smith et al., 2021); they were isolated (García-Azorín et al., 2021;Goswami et al., 2021;Jeste et al., 2020;White et al., 2021;Zhang et al., 2022) due to a lack of resources, and interactions with other people were limited (Gallegos et al., 2022); and they experienced increased anxiety, depression, and parenting stress, which led to decreased physical health, quality of life, and sense of well-being (Suarez-Balcazar et al., 2021). This has led to increased alcohol use and suicidal ideation among young people and men (Thomson et al., 2021). ...
Objective: To elucidate the impact of the coronavirus disease 2019 (COVID-19) pandemic on children and youth with special needs, their families, and their supporters in Japan. Methods: This qualitative descriptive study was carried out via focus groups. Participants were care providers and family caregivers of children and youth with special needs. In the survey, the participants were asked about the changes in physical and mental health, caregiving status, and multidisciplinary collaboration during the COVID-19 pandemic. Results: The categories of the impact of the COVID-19 pandemic on children and youth with special needs and their families were [Concentration of burden on primary caregivers], [Mental stress of the primary caregiver], [Mental and physical impact on children and youth with special needs], [Dissatisfaction/anxiety about changes in social interactions], [Sibling/family mental stress], and [Increased risk of abuse due to lack of respite]. The problems encountered by service providers during the pandemic included [Difficulty in utilizing social resources], [Disparities in the use of support services and systems], [Problems due to the changes in the way people go to the hospital], [Difficulties in assuring quality of professional care], [Challenges in organizing a pediatric home care team], and [Need to understand a diverse group of children and youth with special needs]. Conclusions: Our data suggest the need for support to replace family caregiving, as the burden is concentrated on the primary caregiver. In the future, a system will be required to promptly respond to the special needs of each child through the collaboration of the government, hospital, and community.
... 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]. ...
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
... In addition, Covid-19 caused disruption of health care services worldwide and has limited the ability of patients with a range of neurological conditions to receive adequate care. This has led to mitigation strategies such as self-care, which is defined by the World Health Organization (WHO) as "the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health-care provider" [7,8]. One aspect of self-care behaviour that has increased during Covid-19 is the use of supplements, as indicated by the increase of supplement sales during Covid-19 for the general population [9]. ...
... Additional factors that impacted access to MS-related healthcare include local, state, and national guidelines for limiting the spread of COVID-19, which, at the height of the pandemic, have led to facility closures and the deviation of resources towards acute COVID care. 38 Many neurologists and other healthcare providers utilized telemedicine as an alternative to in-person care. 28 However, possible barriers to telemedicine utilization have been felt disproportionately by at-risk populations during the COVID pandemic, particularly people of advanced age, lower socioeconomic status and historically underserved communities. ...
... As in every field, it caused disruptions of health systems and education at all levels. The leading causes of disruption were travel restrictions due to lockdowns (81.7%) and legal closure of services (65.4%) [1]. Online education was among the solution options for students of all levels. ...
Algologists and neurologists play a significant role in management of headache. The study aimed to compare the headache management approaches of algologist and neurologists and evaluate the impact of telehealth education on their practices. A questionnaire was developed and sent to algologists and neurologists through social media and email. Demographic information, diagnostic and treatment approaches to a headache case, and the impact of telehealth education were evaluated 82 algologists and 97 neurologists completed the survey. There was no significant difference between diagnosis. However, the examination methods differed, with the neurologists relying on history and the algologists suggesting further investigations. Both groups agreed on the application of prophylaxis treatment, with botulinum toxin administration and classical prophylactic agents being accepted in both groups. The newest preventive treatment method was used more frequently in the Neurologists. Participants reported that online meetings had a positive impact on their daily practices, with 48% stating that they were reflected in their practice. Those who attended online meetings marked more up- to-date treatment options such as CGRP antagonists and Botulinum toxin. The study showed that algologists and neurologists had similar approaches to headache management, with differences in examination methods and the use of newer preventive treatment methods. Telehealth education had a positive impact on the participants, improving their knowledge of up-to-date treatment options.
... The COVID-19 pandemic lead to a significant disruption in healthcare, with a review of 396 studies with data from 105 countries finding at least a moderate disruption in 75% of studies, with 82.1% using telemedicine to compensate [25]. Telemedicine was quickly instituted across hospitals and clinics at the start of the COVID-19 pandemic, with a study from Norway reporting that 87% of clinicians endorsed increased use of telemedicine and a survey of American Headache Society membership reporting an average of 120 telemedicine visits per respondent over a 3-month period [26,27]. ...
Purpose of Review
The purpose of the study is to review and discuss the use of telemedicine in headache medicine.
Recent Findings
Before the COVID-19 pandemic, the use of telemedicine for headache was most common in Europe. In recent years, however, telemedicine has been used broadly within headache medicine, including for pediatric patients and behavioral interventions. Several randomized clinical trials have shown that telemedicine is non-inferior to face-to-face visits. Multiple studies have reported substantial benefits associated with telemedicine, including high satisfaction rates, improved access to headache specialists, reduced travel, quicker visits, greater cost-effectiveness, reduced wait times, reduced no-show rates, and the increased comfort of remaining in one’s home environment. The main limitation reported is the lack of a physical examination, including fundus assessment.
Summary
Telemedicine has become a vital tool in headache patient care, with the data supporting its use for patient follow-up in particular.
... Therefore, since the first lockdown of early 2020, these restrictions caused a reduction on volume of hospitalizations and accesses in several essential clinical areas of NHS (Spadea et al., 2021). Neurology departments were also impacted by Covid-19 pandemic, as reported by a global survey that revealed a mild-to-complete disruption of neurological community-based services, long-term residential care, interventions for caregivers and neurorehabilitation (García-Azorín et al., 2021;Moss et al., 2020). This might have had an impact on management of people with chronic neurological diseases such as Multiple Sclerosis (MS) who need regular visits and additional care for relapses, disease progression, symptoms management and /or psychological support. ...
Background:
Covid-19 pandemic impacted on management of people with Multiple Sclerosis (pwMS). Level of satisfaction of pwMS regarding the care received by the staff of Multiple Sclerosis Centers (MSCs) during the pandemic was not fully investigated. In a large patient-centered multicenter study, the therapeutic adherence and quality of care of MSCs was assessed.
Methods:
In April-May 2021, an online survey was widespread by 16 Italian MSCs. Frequencies, percentages and/or means and standard deviations were calculated to describe the sample. ANOVAs were performed to evaluate the effect of sociodemographic and clinical variables on overall pwMS' rating of MSC assistance.
Results:
1670 pwMS completed the survey (67.3% women). During the pandemic, 88% did not change their disease modifying therapy schedule, and 89.1% reached their MSCs with no or little difficulties. Even if only 1.3% of participants underwent a tele-health follow-up visit with their MSC staff, the 80.1% believed that tele-health services should be improved regardless of pandemic. 92% of participants were satisfied of how their MSC took charge of their needs; ANOVAs revealed an effect of disease duration on pwMS' level of satisfaction on MSCs management during the pandemic.
Conclusions:
The results revealed an efficient MSCs response to Covid-19 pandemic and provided the basis for the implementing of tele-health services that would further improve the taking charge of patients, particularly those with longer disease, higher disability, and/or living far from their MSC.
... We found a significantly higher percentage of PWMS resorting to swabs. Although in Italy [18] as elsewhere [26], the use of healthcare services by PWMS during the pandemic was reduced, this may not be true for the prescription of swabs. This result is in line with what has been observed among patients with immune-mediated inflammatory diseases [21] and other chronic diseases [27,28]. ...
People with multiple sclerosis (PWMS) are at high risk of being affected by the disruption of health services that occurred during the COVID-19 pandemic months. The aim of this study was to evaluate the effect of the pandemic on the health outcomes of PWMS. PWMS and MS-free residing in Piedmont (north-west of Italy) were identified from electronic health records and linked with the regional COVID-19 database, the hospital-discharge database, and the population registry. Both cohorts (9333 PWMS and 4,145,856 MS-free persons) were followed-up for access to swab testing, hospitalisation, access to the Intensive Care Unit (ICU), and death from 22 February 2020 to 30 April 2021. The relationship between the outcomes and MS was evaluated using a logistic model, which was adjusted for potential confounders. The rate of swab testing was higher in PWMS, but the positivity to infection was similar to that of MS-free subjects. PWMS had a higher risk of hospitalisation (OR = 1.74; 95% IC, 1.41–2.14), admission to ICU (OR = 1.79; 95% IC, 1.17–2.72), and a slight, albeit not statistically significant, increase in mortality (OR = 1.28; 95% IC, 0.79–2.06). Compared to the general population PWMS with COVID-19 had an increased risk of hospitalization and admission to the ICU; the mortality rate did not differ.
... 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]. ...
... 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]. ...
... Collected data differed whether participants were clinicians or patients and their caregivers. In addition, most publications assessing neurological services delivery concerning children focused on epilepsy management during the pandemic while fewer studies looked at the situation on other neurological disorders [5]. Other considerations are as substantial as the previous ones when analyzing the data already published like age range and the neurological condition of the studied populations, healthcare system structure and services already available in the country where the study was carried out as well as the disease transmission stage in the region and the category of income bank as shown in Table 1. ...
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.
... Concurrently, elective and "non-urgent" procedures, like neurophysiological exams, were suspended, with routine outpatient visits postponed. The continuity of care was not adequately ensured, locally [17] and internationally [19]. ...
Background
During the Sars-CoV-2 virus pandemic, Italy faced an unrivaled health emergency. Its impact has been significant on the hospital system and personnel. Clinical neurophysiology technicians played a central role (but less visibly so compared to other healthcare workers) in managing the COVID-19 pandemic. This research aims to explore the experiences of clinical neurophysiology technicians during the pandemic and contribute to the debate on the well-being of healthcare workers on the front line.
Methods
We implemented a cross-sectional survey across Italy. It contained questions that were open-ended for participants to develop their answers and acquire a fuller perspective. The responses were analyzed according to the framework method.
Results
One hundred and thirty-one responses were valid, and the following themes were generated: technicians’ experiences in their relationship with patients, technicians’ relationship with their workgroup and directors, and technicians’ relationship with the context outside of their work. The first theme included sub-themes: fear of infection, empathy, difficulty, a sense of obligation and responsibility, anger, and sadness. The second theme contained selfishness/solidarity in the workgroup, lack of protection/collaboration from superiors, stress, and distrust. The last theme included fear, stress/tiredness, serenity, sadness, and anger.
Conclusion
This study contributes to building a humanized perspective for personnel management, bringing attention to the technical work of healthcare professionals in an emergency and the emotional and relational dimensions. These are the starting points to define proper, contextually adequate support.
