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Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study.

ABSTRACT: Background: People with multiple sclerosis (PwMS) experienced changes in health behaviors and access to MS care due to the COVID-19 pandemic. The USA has the highest recognized number of Covid19 infections globally. The extent of the impact of COVID-19 has not been well characterized in large samples of PwMS to date. The MS patient perspective on COVID-19 would complement the physician-reported cases of MS and COVID-19 in the literature.

Methods: A cross-sectional survey of adult PwMS was performed online, using the U.S.-based patient-powered iConquerMS™ platform, in April 2020.

Results: There were 1,145 respondents (response rate: 20%). 1,019 had a diagnosis of MS and responded completely (average age: 54.2 years, range: 20-81; 79% female; 64% relapsing remitting, 22% secondary progressive, 12% primary progressive; 88% in the USA). 748 (73%) used a DMT in the last year, primarily higher-efficacy therapies: ocrelizumab (n=238), dimethyl fumarate (n=85), fingolimod (n=80). The most frequent comorbidities were depression (41%), hypertension (26%), and asthma (12%). Women were more worried than men about COVID-19 (p=0.001); non-white-identifying PwMS believed it was a greater danger to their health than white-identifying PwMS (p=0.002). Through the continuum of symptoms to care, 61% of PwMS (n=617) reported symptoms associated with COVID-19, 39% (n=395) knew someone exposed to COVID-19, 4% (n=38) were aware of a personal COVID-19 exposure, 13% (n=128) wanted testing for COVID-19 but could not access it, and 4% (n=43) were tested. Specific to their MS care, 64% (n=650) canceled a medical visit, 22% (n=222) canceled a neurologist visit, 11% (n=112) canceled an MRI, 21% (n=212) canceled a laboratory test, and 10% (n=98) changed their DMT in some way due to COVID19 including 65 delaying at least one dose. 37% (n=382) had a telehealth visit due to COVID-19. 37% of PwMS (n=374) experienced employment changes, most commonly working from home (n=194) and having work hours reduced (n=65) while 32 lost their jobs. Of the 7 cases who tested positive for COVID-19 (<1% of participants) (5 female; age range: 29-64 years), DMTs included dimethyl fumarate (n=2), ocrelizumab (n=1), rituximab (n=1), and a clinical trial drug (n=1).

Conclusions: A majority of people with MS reported interruptions to their MS care along the MS care pathway alongside limited access to COVID-19 testing. Postponements and delays in care were common with 10% of participants reporting a change in their DMT administration. Less than 1% of this self-referred convenience online cohort had a positive test for COVID-19 although more than half reported symptoms that are associated with COVID-19.

SUBMITTER: Vogel AC

PROVIDER: S-EPMC7501524 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study.

Vogel Andre C AC Schmidt Hollie H Loud Sara S McBurney Robert R Mateen Farrah J FJ

Multiple sclerosis and related disorders 20200919

<h4>Background</h4>People with multiple sclerosis (PwMS) experienced changes in health behaviors and access to MS care due to the COVID-19 pandemic. The USA has the highest recognized number of Covid19 infections globally. The extent of the impact of COVID-19 has not been well characterized in large samples of PwMS to date. The MS patient perspective on COVID-19 would complement the physician-reported cases of MS and COVID-19 in the literature.<h4>Methods</h4>A cross-sectional survey of adult Pw ...[more]

PMID: 32977074

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Project description:BackgroundPublic health responses to Coronavirus Disease 2019 (COVID-19) including lockdowns may negatively impact physical and mental functioning in clinical populations. People living with multiple sclerosis (MS) may be more susceptible to physical function deterioration while practicing social distancing. Recent reports have suggested that about 50% of people with MS (pwMS) decreased their leisure physical activity during COVID-19, and upwards of 30% reported decreased physical fitness levels. However, the impact of social distancing on adverse health-related outcomes such as falls has not received much scrutiny. Therefore, we explored the frequency and characteristics of falls experienced by people living with and without MS during the COVID-19 pandemic.MethodsTwo-hundred and thirty-nine individuals, including 106 pwMS (median age: 59 years) and 133 people living without MS (median age: 66 years) were recruited for this cross-sectional study. A snowball sampling strategy was used for online recruitment. Participants completed a customized falls questionnaire and the number of falls experienced (if any) during COVID-19 was recorded. Fall-related characteristics such as the timing, locations, activities undertaken before falling and consequences, as well as self-reported physical activity were also recorded.ResultsOverall, participants reported 232 falls (1.67 falls/person in pwMS and 0.41 falls/person in non-MS participants). People living with MS (pwMS) had a significantly higher frequency of falls (58.5% vs 21.8%; p< 0.001) and recurrent falls (45.3% vs 9.8%; p< 0.001) compared to non-MS participants. Additionally, pwMS reported a significantly higher proportion of in-home falls (83.9% vs 54.2%; p = 0.004), as well as a higher proportion of overall injuries (44.3% vs 12.5%, p< 0.001), fractures (5.7% vs 0.8%, p = 0.048), and healthcare utilization (9.4% vs 1.6%, p = 0.007) compared to non-MS participants. A similar proportion of pwMS (49.1%) and non-MS participants (52.2%) reported lower physical activity levels during COVID-19.ConclusionThis cross-sectional study revealed that pwMS remain at high risk of falls and fall-related outcomes during COVID-19. The high number of falls experienced by pwMS is of clinical concern considering the current strain on the healthcare system. Findings from this study highlight the importance of monitoring falls and the potential for telerehabilitation in persons with MS during COVID-19.

Project description:Objective: The coronavirus disease 2019 (COVID-19) has radically changed the world in a few weeks. Italy has been one of the first and most affected countries with more than 30,000 deaths up to now. Public health measures as quarantine or national lockdown are necessary to limit the spread of infectious diseases, but it is unsurprising that depriving people of their liberty has negative psychological effects. This is especially the case for people with chronic diseases, including neurological conditions like multiple sclerosis (MS). People with MS (PwMS) have a higher burden of neuropsychiatric comorbidities and are known to undertake maladaptive coping strategies in stress conditions. The aim of the present study is to investigate the impact of COVID-19 pandemic lockdown on mental health of an Italian cohort of PwMS in comparison with healthy controls (HCs). Methods: A total of 60 PwMS and 50 HCs (chosen among patients' cohabitants) were asked to answer a Web-based survey. This survey inquired about the impact of COVID-19 on patient's quality of life, job, and daily routine. Mood, fatigue, and sleep quality were evaluated using the Beck Depression Inventory II (BDI-II), the Generalized Anxiety Disease 7 (GAD-7), the Fatigue Severity Scale (FSS), and the Pittsburgh Sleep Quality Index (PSQI). Results: Overall, patients had higher scores of BDI, FSS, and PSQI, and these differences were statistically significant (p < 0.05). When we looked at the subscores of the BDI, we detected a statistically significant difference for the neurovegetative part-that concerns with sleep, appetite, sex, and quality of sleep (p < 0.05). One out of five patients reported new symptoms or worsening of known symptom, in particular, sensory disturbances, and fatigue. However, no symptoms were severe enough to require hospitalization. When we looked for correlations among variables, we found that there was a significant relationship between unemployment and BDI total score, GAD-7, and PSQI in MS group. The presence of new symptoms or the worsening of symptoms positively related to FSS and to PSQI. Discussion: We identified that the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic had a significant impact on the psychological status of patients with MS. Compared with the general population, PwMS presented a higher burden of depressive symptoms, a worse sleep quality and perceived an increase in fatigue level, one of the most disabling symptoms of MS. The COVID-19 epidemic poses a challenge to psychological resilience. More studies are warranted to better understand the long-term consequences of the pandemic on mental health of vulnerable people during the disease outbreaks.

Project description:Many countries are introducing smaller, more home-like care facilities that represent a radically new approach to nursing home care for people with dementia. The green care farm is a new type of nursing home developed in the Netherlands. The goal of this study was to compare quality of care, quality of life and related outcomes in green care farms, regular small-scale living facilities and traditional nursing homes for people with dementia.A cross-sectional design was used. Three types of nursing homes were included: (1) green care farms; (2) regular small-scale living facilities; (3) traditional nursing homes. All participating nursing homes were non-profit, collectively funded nursing homes in the south of the Netherlands. One hundred and fifteen residents with a formal diagnosis of dementia were included in the study. Data on quality of care was gathered and consisted of outcome indicators (e.g. falling incidents, pressure ulcers), structure indicators (e.g. hours per resident per day), and process indicators (e.g. presence, accessibility and content of protocols on care delivery). Furthermore, questionnaires on cognition, dependence in activities of daily living, quality of life, social engagement, neuropsychiatric symptoms, agitation, and depression were used.Data showed that quality of care was comparable across settings. No large differences were found on clinical outcome measures, hours per resident per day, or process indicators. Higher quality of life scores were reported for residents of green care farms in comparison with residents of traditional nursing homes. They scored significantly higher on the Quality of Life - Alzheimer's disease Scale (p < 0.05, ES = 0.8) indicating a better quality of life. In addition, residents of green care farms scored higher on three quality of life domains of the Qualidem: positive affect, social relations and having something to do (p < 0.05, ES > 0.7). No differences with regular small-scale living facilities were found.Green care farms seem to be a valuable alternative to existing nursing homes. This is important as people with dementia are a heterogeneous group with varying needs. In order to provide tailored care there also is a need for a variety of living environments.

Dataset Information

Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study.

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Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study.

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