Fear of relapse and quality of life in multiple sclerosis: The mediating role of psychological resilience.

The goal of this study was to examine the mediating role of psychological resilience in the relationship between fear of relapse and quality of life in a sample of patients with multiple sclerosis (PwMS). This cross-sectional study was developed online. A total of 240 PwMS were surveyed using the Multiple Sclerosis Quality of Life inventory, the Fear of Relapse Scale and the Connor-Davidson Resilience Scale. To perform the mediation analysis PROCESS macro was used. In our study, fear of relapse was a predictor of psychological resilience and quality of life, and psychological resilience was a predictor of quality of life. Finally, psychological resilience showed a mediating role in the relationship between fear of relapse and quality of life. Considering that resilience is a modifiable variable, the implementation of interventions aimed at enhancing resilience can have a favorable impact on the psychological well-being and quality of life of patients with multiple sclerosis.

Tracking the impact of multiple sclerosis on employment status: the development of a questionnaire.

BACKGROUND: Multiple sclerosis (MS) has a negative effect on employment status. OBJECTIVE: To present the preliminary results of a special questionnaire designed to collect employment information on patients with MS. METHODS: The questionnaire on the impact of MS on employment status was completed by 63 patients. Fatigue, cognition, and depression were also evaluated, and 33 healthy participants were recruited as a control group. RESULTS: Regarding the patients' employment status, we found rates of 31.7% of full-time employment, 28.6% of part-time employment, 7.9% of unemployment due to MS, 4.8% of housewives, 1.6% retirement due to age, 15.9% of retirement due to disability, 7.9% of medical leave due to MS, and 1.6% of medical leave for other reasons. The rate of unemployment among the patients was significantly higher compared with that of the control group. Out of 38 working patients, 31% had been absent from work for the previous 3 months due to MS, and 50% had to make changes in their work to remain employed. Out of the 19 unemployed patients, 78% said that walking difficulties were the cause of unemployment, while 52% thought cognitive impairment was the cause. CONCLUSIONS: The questionnaire provides a record of the employment status of patients with MS and describes the impact on work from their point of view.

ANTECEDENTES: A esclerose múltipla (EM) tem um efeito negativo na situação laboral. OBJETIVO: Apresentar os resultados preliminares de um questionário elaborado para coletar informações sobre a situação laboral de pacientes com EM. MéTODOS: O questionário sobre o impacto da EM na situação laboral foi preenchido por 63 pacientes. Fadiga, cognição e depressão também foram avaliadas, e 33 pacientes saudáveis foram incluídos como grupo controle. RESULTADOS: Quanto à situação laboral dos pacientes, foram encontradas taxas de 31,7% de emprego em tempo integral, 28,6% de emprego em meio período, 7,9% de desemprego por EM, 4,8% de donas de casa, 1,6% aposentadoria por idade, 15,9% de aposentadoria por invalidez, 7,9% por licença médica por EM, e 1,6% de licença médica por outros motivos. A taxa de desemprego entre os pacientes foi significativamente mais alta em comparação com a do grupo controle. Dos 38 pacientes empregados, 31% tiveram que se afastar do trabalho nos 3 meses anteriores por causa da EM, e 50% tiveram que fazer mudanças em seu trabalho para permanecer empregado. Dos 19 pacientes desempregados, 78% mencionaram que as dificuldades de locomoção foram a causa do desemprego, enquanto 52% reportaram que a deterioração cognitiva foi a causa. CONCLUSõES: Este questionário fornece um registro da situação laboral dos pacientes com EM e descreve o seu impacto no emprego do ponto de vista deles.

Tracking the impact of multiple sclerosis on employment status: the development of a questionnaire / Avaliação do impacto da esclerose múltipla na situação laboral: desenvolvimento de um questionário

Abstract Background Multiple sclerosis (MS) has a negative effect on employment status. Objective To present the preliminary results of a special questionnaire designed to collect employment information on patients with MS. Methods The questionnaire on the impact of MS on employment status was completed by 63 patients. Fatigue, cognition, and depression were also evaluated, and 33 healthy participants were recruited as a control group. Results Regarding the patients' employment status, we found rates of 31.7% of fulltime employment, 28.6% of part-time employment, 7.9% of unemployment due to MS, 4.8% of housewives, 1.6% retirement due to age, 15.9% of retirement due to disability, 7.9% of medical leave due to MS, and 1.6% of medical leave for other reasons. The rate of unemployment among the patients was significantly higher compared with that of the control group. Out of 38 working patients, 31% had been absent from work for the previous 3 months due to MS, and 50% had to make changes in their work to remain employed. Out of the 19 unemployed patients, 78% said that walking difficulties were the cause of unemployment, while 52% thought cognitive impairment was the cause. Conclusions The questionnaire provides a record of the employment status of patients with MS and describes the impact on work from their point of view.

Resumo Antecedentes A esclerose múltipla (EM) tem um efeito negativo na situação laboral. Objetivo Apresentar os resultados preliminares de um questionário elaborado para coletar informações sobre a situação laboral de pacientes com EM. Métodos O questionário sobre o impacto da EM na situação laboral foi preenchido por 63 pacientes. Fadiga, cognição e depressão também foram avaliadas, e 33 pacientes saudáveis foram incluídos como grupo controle. Resultados Quanto à situação laboral dos pacientes, foram encontradas taxas de 31,7% de emprego em tempo integral, 28,6% de emprego em meio período, 7,9% de desemprego por EM, 4,8% de donas de casa, 1,6% aposentadoria por idade, 15,9% de aposentadoria por invalidez, 7,9% por licença médica por EM, e 1,6% de licença médica por outros motivos. A taxa de desemprego entre os pacientes foi significativamente mais alta em comparação coma do grupo controle. Dos 38 pacientes empregados, 31% tiveram que se afastar do trabalho nos 3 meses anteriores por causa da EM, e 50% tiveram que fazer mudanças em seu trabalho para permanecer empregado. Dos 19 pacientes desempregados, 78% mencionaram que as dificuldades de locomoção foram a causa do desemprego, enquanto 52% reportaram que a deterioração cognitiva foi a causa. Conclusões Este questionário fornece um registro da situação laboral dos pacientes com EM e descreve o seu impacto no emprego do ponto de vista deles.

Validity and reliability of the 10-item Connor-Davidson Resilience Scale (CD-RISC-10) in a sample of Spanish-speaking patients with Multiple Sclerosis.

BACKGROUND: It is urgent to increase studies aimed at exploring and understanding the role that psychological resilience plays in PwMS. To achieve this objective, an important requirement is to have properly validated instruments that allow exploring psychological resilience in MS patients. The aim of this study was to evaluate the validity and reliability of the 10-item CD-RISC in a sample of Spanish-speaking patients with MS (PwMS). METHODS: An online multicenter study was conducted on 214 MS patients from 11 Spanish-speaking countries (Argentina, Mexico, Dominican Republic, Chile, Spain, Cuba, Colombia, Uruguay, Paraguay, Peru, and El Salvador). Confirmatory factor analysis (CFA) was performed to assess the factor structure of the 10-item CD-RISC. Model fits were assessed through the χ2/df value, comparative fit index (CFI), and root mean square error of approximation (RMSEA). RESULTS: The 10-item CD-RISC showed good psychometric characteristics in our sample of PwMS. The single-factor model in the CFA yielded a good model fit (χ2=99.380(35), p<.001; χ2/df = 2.83; RMSEA=.090; CFI=.92). Cronbach's alpha of the CD-RISC-10 items version (Spanish version) was .88. The CD-RISC-10 was significantly correlated with quality of life scale (r = .420, p < .001), fear of relapse scale (r = -.327, p < .001), and fatigue scale (r = -.367, p < .001). CONCLUSIONS: The CD-RISC-10 has satisfactory psychometric properties and is a suitable tool for measuring resilience in Spanish-speaking patients with multiple sclerosis.

Decision making process in multiple sclerosis: An Argentine pilot study.

BACKGROUND: There is scarce information regarding the decision-making process (DMP) in people with MS (PwMS) from Latin America. OBJECTIVE: To evaluate the DMP in Argentinean PwMS and to assess its relationship with patient preferences, and clinical-demographic characteristics. METHODS: PwMS from the patient organization Esclerosis Múltiple Argentina (n = 1275) were invited to participate in a self-administered web-based survey. Participants were asked to provide clinical-demographic information and to complete a questionnaire on their perceptions about the information provided by their physician, the Control Preference Scale, and the Satisfaction with the Decisions and Care Questionnaire, and were inquired on their preferred sources of information about MS. RESULTS: The survey was completed by 379 PwMS. Most were females (67%); mean age: 40.3 (SD = 11.1) years; mean disease duration: 7.9 (SD = 7.2) years. Patients' decisional control preferred role was active in 47%, shared in 27%, and passive in 26%. A moderate concordance (weighted kappa 0.55) was observed between patients' preferences and self-reported DMP. Seventy-two percent participated in the DMP according to their preferences (concordance rates: active 66%, shared 87%, passive 51%). Most (83%) declared receiving information from their neurologists, matching their preferences (94%). CONCLUSIONS: Argentinian PwMS have distinctive preferences regarding information management and decision making.

Evaluation of short-term safety of COVID-19 vaccines in patients with multiple sclerosis from Latin America.

BACKGROUND: To date, there are no data available on the safety of COVID-19 vaccines in Latin American patients with Multiple Sclerosis (MS). OBJECTIVE: Characterize safety of COVID-19 vaccines in Latin American (LATAM) patients with Multiple Sclerosis (pwMS). METHODS: A cross-sectional study between February 1, 2021, and April 30, 2021. Individuals with MS from LATAM countries were invited to participate in a self-administered web-based survey, through MS patient organizations from the region. RESULTS: 393 vaccinated pwMS from 10 different Latin American countries were included. The vaccines administered were: inactivated virus vaccines (IVV) in 38.2% of patients, adenovirus vector vaccines (AdV) in 48.8% and mRNA vaccines 13%. All patients received at least one dose of any of the COVID-19 vaccines and 123 (31.3%) declared receiving a second dose. Mean (SD) age 41.5 (11.8) years, 82.4% female, MS disease duration: 8.4 (8.2) years. No serious adverse events were reported with any of the COVID-19 vaccines after either the first or second dose. A lower frequency of adverse events was found with IVV (22%) in comparison with AdV (46.4%) and mRNA (35.3%) (p < 0.01). Five participants reported having an MS relapse after IVV first dose. CONCLUSION: COVID-19 vaccines applied in LATAM proved safe for MS patients.

Associations of Disease-Modifying Therapies With COVID-19 Severity in Multiple Sclerosis.

BACKGROUND AND OBJECTIVES: People with multiple sclerosis (MS) are a vulnerable group for severe coronavirus disease 2019 (COVID-19), particularly those taking immunosuppressive disease-modifying therapies (DMTs). We examined the characteristics of COVID-19 severity in an international sample of people with MS. METHODS: Data from 12 data sources in 28 countries were aggregated (sources could include patients from 1-12 countries). Demographic (age, sex), clinical (MS phenotype, disability), and DMT (untreated, alemtuzumab, cladribine, dimethyl fumarate, glatiramer acetate, interferon, natalizumab, ocrelizumab, rituximab, siponimod, other DMTs) covariates were queried, along with COVID-19 severity outcomes, hospitalization, intensive care unit (ICU) admission, need for artificial ventilation, and death. Characteristics of outcomes were assessed in patients with suspected/confirmed COVID-19 using multilevel mixed-effects logistic regression adjusted for age, sex, MS phenotype, and Expanded Disability Status Scale (EDSS) score. RESULTS: Six hundred fifty-seven (28.1%) with suspected and 1,683 (61.9%) with confirmed COVID-19 were analyzed. Among suspected plus confirmed and confirmed-only COVID-19, 20.9% and 26.9% were hospitalized, 5.4% and 7.2% were admitted to ICU, 4.1% and 5.4% required artificial ventilation, and 3.2% and 3.9% died. Older age, progressive MS phenotype, and higher disability were associated with worse COVID-19 outcomes. Compared to dimethyl fumarate, ocrelizumab and rituximab were associated with hospitalization (adjusted odds ratio [aOR] 1.56, 95% confidence interval [CI] 1.01-2.41; aOR 2.43, 95% CI 1.48-4.02) and ICU admission (aOR 2.30, 95% CI 0.98-5.39; aOR 3.93, 95% CI 1.56-9.89), although only rituximab was associated with higher risk of artificial ventilation (aOR 4.00, 95% CI 1.54-10.39). Compared to pooled other DMTs, ocrelizumab and rituximab were associated with hospitalization (aOR 1.75, 95% CI 1.29-2.38; aOR 2.76, 95% CI 1.87-4.07) and ICU admission (aOR 2.55, 95% CI 1.49-4.36; aOR 4.32, 95% CI 2.27-8.23), but only rituximab was associated with artificial ventilation (aOR 6.15, 95% CI 3.09-12.27). Compared to natalizumab, ocrelizumab and rituximab were associated with hospitalization (aOR 1.86, 95% CI 1.13-3.07; aOR 2.88, 95% CI 1.68-4.92) and ICU admission (aOR 2.13, 95% CI 0.85-5.35; aOR 3.23, 95% CI 1.17-8.91), but only rituximab was associated with ventilation (aOR 5.52, 95% CI 1.71-17.84). Associations persisted on restriction to confirmed COVID-19 cases. No associations were observed between DMTs and death. Stratification by age, MS phenotype, and EDSS score found no indications that DMT associations with COVID-19 severity reflected differential DMT allocation by underlying COVID-19 severity. DISCUSSION: Using the largest cohort of people with MS and COVID-19 available, we demonstrated consistent associations of rituximab with increased risk of hospitalization, ICU admission, and need for artificial ventilation and of ocrelizumab with hospitalization and ICU admission. Despite the cross-sectional design of the study, the internal and external consistency of these results with prior studies suggests that rituximab/ocrelizumab use may be a risk factor for more severe COVID-19.

Changes on the health care of people with multiple sclerosis from Latin America during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has resulted in uncertain access to medical treatment for people with multiple sclerosis (pwMS) all over the world. However, there is no data regarding its impact on access to health care of pwMS from Latin America. OBJECTIVES: We investigated and described changes in health care delivery for pwMS from Latin America during the COVID-19 pandemic. METHODS: PwMS from 18 patient organizations of the region completed a web-based survey hosted from May to October 2020. RESULTS: A total of 602 pwMS completed the questionnaire. Changes in disease-modifying therapies (DMTs) use: 6.7% of pwMS on continuous DMTs claimed to stopped them; 14.1% of those on infusion therapies declared to postpone their dosing; 68.8% declared delaying the initiation of a DMT. Disruptions in accessing rehabilitation services were reported by 65.7%. Changes in laboratory and MRI monitoring were reported by 30% and 33%, respectively. In a multivariable-adjusted logistic regression model, changes in laboratory monitoring were significantly associated with increased odds of postponing MRI monitoring (OR 4.09 CI95% 2.79-6.00, p < 0.001). CONCLUSIONS: The COVID-19 pandemic has disrupted all aspects of the routine care for pwMS from Latin America. Consequences are yet to be determined.

Research priorities in multiple sclerosis in Latin America: A multi-stakeholder call to action to improve patients care: Research priorities in MS in LATAM.

As human and economic resources are limited, especially in Latin America (LATAM), it is important to identify research priorities to improve multiple sclerosis (MS) patients care in the region. The objective was to generate a multidisciplinary consensus on research priorities in MS for patients care in LATAM by involving healthcare professionals and MS patient associations. METHODS: consensus was reached through a four-step modified Delphi method designed to identify and rate research priorities in MS in LATAM. The process consisted of two qualitative assessments, a general ranking phase and a consensus meeting followed by a more detailed ranking phase RESULTS: a total of 62 participants (35 neurologists, 4 nurses, 12 kinesiologists, 7 neuropsychologists and 4 patient association members) developed the process. At the final ranking stage following the consensus meeting, each participant provided their final rankings, and the top priority research questions were outlined. 11 research priorities were identified focusing on healthcare access, costs of the disease, physical and cognitive evaluation and rehabilitation, quality of life, symptoms management, prognostic factors, the need of MS care units and patient's management in emergencies like COVID-19. CONCLUSION: this work establishes MS research priorities in LATAM from multiple perspectives. To pursue the actions suggested could launch the drive to obtain information that will help us to better understand the disease in our region and, especially, to better care for affected patients.

COVID-19 in people with multiple sclerosis: A global data sharing initiative.

BACKGROUND: We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale. OBJECTIVES: Our mission is to scale-up COVID-19 data collection efforts and provide the MS community with data-driven insights as soon as possible. METHODS: Numerous stakeholders were brought together. Small dedicated interdisciplinary task forces were created to speed-up the formulation of the study design and work plan. First step was to agree upon a COVID-19 MS core data set. Second, we worked on providing a user-friendly and rapid pipeline to share COVID-19 data at a global scale. RESULTS: The COVID-19 MS core data set was agreed within 48 hours. To date, 23 data collection partners are involved and the first data imports have been performed successfully. Data processing and analysis is an on-going process. CONCLUSIONS: We reached a consensus on a core data set and established data sharing processes with multiple partners to address an urgent need for information to guide clinical practice. First results show that partners are motivated to share data to attain the ultimate joint goal: better understand the effect of COVID-19 in PwMS.

Anxiety in Argentinian patients with multiple sclerosis: Prevalence and associated factors.

BACKGROUND: There is scarce information in Latin America regarding the prevalence of anxiety in patients with multiple sclerosis (MS) and its association with different clinical-demographic factors. OBJECTIVE: We aimed to determine the prevalence of anxiety in Argentinian MS patients and to analyze associated factors. MATERIALS AND METHODS: A cross-sectional analysis was performed with consecutive MS outpatients from two centers in Buenos Aires, Argentina. Anxiety was evaluated according to the anxiety subscale of the Hospital Anxiety and Depression Scale (HADS-A). RESULTS: Eighty-three patients were included. Fifty-three (63%) were females, mean age: 46 (SD=13.9) years. Forty-five percent (n = 38) had anxiety according to the HADS-A. Patients with anxiety were significantly younger (42.2 vs 49.1 years, p = 0.02), had a shorter time since diagnosis (8.3 vs 12.3 years, p = 0.02), had a history of psychiatric disorders (36.8% vs 8.8%, p = 0.002), were depressed (57.8% vs 2.2%, p<0.001) and had worse health-related quality of life according to the COOP/Wonca questionnaire (mean score: 21.5 vs 15.2, p<0.001). Depression (OR: 15.2, 95% CI 1.4-157.3, p = 0.02) and worse health-related quality of life (OR: 1.2,95% CI 1-1.4, p = 0.008) remained significantly associated with anxiety after adjusting for all other significant variables. No differences were observed regarding sex, marital and occupational status, education, family history of psychiatric disorders, disease course and disability according to the EDSS. CONCLUSIONS: The prevalence of anxiety in Argentinian MS outpatients was higher than previously reported in other populations. Anxiety was strongly associated with negative outcomes such as depression and reduced health-related quality of life. These results emphasize the burden of psychiatric morbidity in Argentinian MS patients.