scholarly journals A National Representative, Cross-Sectional Study by the Hellenic Academy of NeuroImmunology (HEL.A.NI.) on COVID-19 and Multiple Sclerosis: Overall Impact and Willingness Toward Vaccination

2021 ◽  
Vol 12 ◽  
Author(s):  
Marina Boziki ◽  
Charis Styliadis ◽  
Christos Bakirtzis ◽  
Eleni Grigoriadou ◽  
Aggeliki-Styliani Sintila ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sexual Dysfunction ◽  
Significant Proportion ◽  
Cross Sectional Study ◽  
Information And Communications Technology ◽  
Online Information ◽  
Cross Sectional ◽  
And Behavior

Background: In the context of the coronavirus disease 2019 (COVID-19) pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted.Aim: The present study aims to capture the effects of the COVID-19 pandemic in several aspects of the quality of life of PwMS, in perception and behavior to COVID-19 and multiple sclerosis (MS), as well as concerning healthcare, working conditions, and the willingness toward COVID-19 vaccination.Methods: This study is an initiative of the Hellenic Academy of Neuroimmunology (HEL.A.NI.) and it has been included in the MS Data Alliance (MSDA) Catalog, which can be accessed after creating an account on https://msda.emif-catalogue.eu/login. Two online questionnaires were administered: (i) impact of the COVID-19 pandemic on the quality of life, behavior, and healthcare of PwMS (Questionnaire A) and (ii) vaccination against COVID-19 (Questionnaire B). People with MS were invited to participate by the Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS).Results: Three-hundred-ninety PwMS responded to Questionnaire A, whereas 176 PwMS provided answers for Questionnaire B. Older age, longer disease duration, and higher MS-related disability were associated with the increased perceived sensitivity toward severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, as well as the increased perceived severity of COVID-19 upon potential infection. A significant proportion of PwMS experienced restricted access to MS-related health professionals, disease-modifying therapy (DMT) prescription, and/or to MS-related laboratory examination due to the pandemic. Subgroups of PwMS reported exacerbated symptoms (i.e., chronic MS-related symptoms, fatigue and/or worsening of pre-existing fatigue, and sexual dysfunction and or/worsening of pre-existing sexual dysfunction). Overall, the majority of the participants reported either a strong willingness to get vaccinated against COVID-19 or a likeliness to undergo vaccination. Being aware of the HEL.A.NI. recommendations regarding COVID-19 vaccination for PwMS were reported to increase the willingness of the participants to receive the vaccine.Conclusions: Our results highlight the necessity of scientific and patient organizations in taking joint action to increase awareness on health-related issues during the pandemic and to provide accurate and up-to-date guidance for PwMS. Online information and communications technology (ICT) tools for polling public belief and behavior may prove valuable as means of retaining active routes of communication between stakeholders.

scholarly journals Predisposing Factors for Sexual Dysfunction in Multiple Sclerosis

2021 ◽  
Vol 12 ◽  
Author(s):  
Patrick Altmann ◽  
Fritz Leutmezer ◽  
Katharina Leithner ◽  
Tobias Monschein ◽  
Markus Ponleitner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Multiple Sclerosis ◽  
Sexual Dysfunction ◽  
Depression Scale ◽  
Cross Sectional Study ◽  
Depression And Anxiety ◽  
Cross Sectional ◽  
Anxiety Screening

Sexual dysfunction (SD) in people with multiple sclerosis (pwMS) has a detrimental impact on individual health-related quality of life (HRQoL). It is not clear whether SD in multiple sclerosis (MS) is an independent symptom or merely a byproduct of other symptoms such as depression or anxiety. This cross-sectional study of 93 pwMS determines risk factors for SD in MS based on prevalence, HRQoL, and associated disease outcomes. Diagnosis of SD was determined based on the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) and correlated with physical disability (measured by Expanded Disability Status scale, EDSS), depression and anxiety [Hospital Anxiety and Depression Scale (HADS)], and HRQoL [Multiple Sclerosis Quality of Life-54 (MSQoL-54)]. Multivariate regression models were performed to determine independent risk factors for SD in pwMS. Almost half of the participants in this study (46%) reported SD. HRQoL was significantly poorer in patients with MS suffering from SD (median [IQR] MSQoL-54 scores: physical subscale 52 [41–68] vs. 81 [69–89], p < 0.001; mental subscale 50 [38–82] vs. 86 [70–89], p < 0.001). In the multivariate model, EDSS was the only independent risk factor for SD (OR 18.1 for EDSS ≥4 [95% CI 3.3–31.4, p < 0.001]), while depression and anxiety were not. We conclude that the risk for SD is growing with increasing EDSS and is independent of depression or anxiety. Screening for SD becomes particularly relevant in patients with growing disability.

scholarly journals Adherence to Therapy, Physical and Mental Quality of Life in Patients with Multiple Sclerosis

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavioral Interventions ◽  
Positive Association ◽  
Cross Sectional Study ◽  
Health Index ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Adherence To Therapy

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.

scholarly journals Quality of life in multiple sclerosis: The differential impact of motor and cognitive fatigue

2021 ◽  
Vol 7 (1) ◽  
pp. 205521732199604
Author(s):  
Sabina David Ruban ◽  
Claudia Christina Hilt ◽  
Thor Petersen
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Cross Sectional Study ◽  
University Hospital ◽  
Cognitive Fatigue ◽  
Cross Sectional ◽  
Impact Scale ◽  
Assessment And Treatment

Background Multiple sclerosis is a chronic disease leading to reduced quality of life. Objectives To investigate whether motor and cognitive fatigue impact differently on aspects of quality of life among patients with multiple sclerosis, independently from bodily disability. Methods 79 patients with multiple sclerosis from Aalborg University Hospital, Denmark were included in an observational, cross-sectional study. Each subject completed two separate questionnaires regarding fatigue (Fatigue Scale for Motor and Cognitive Functions and Modified Fatigue Impact Scale) and one regarding quality of life (Short Form 36). Disability was measured with the Expanded Disability Status Scale (EDSS)-scores obtained from patient records. Results All fatigue scores were significantly correlated to all areas of quality of life (p < 0,05). This remained significant after adjustment for age, disease duration and EDSS-score. When looking at each type of fatigue separately, cognitive fatigue correlated mainly with mental health aspects of quality of life and motor fatigue with physical health areas of quality of life. Conclusion Increased motor and cognitive fatigue lead to a differential reduction in physical and mental quality of life, independently of bodily disability. This underlines the importance of proper assessment and treatment of fatigue among patients with multiple sclerosis.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

scholarly journals Is the Concept of Quality of Life Relevant for Multiple Sclerosis Patients with Cognitive Impairment? Preliminary Results of a Cross-Sectional Study

PLoS ONE ◽  
2012 ◽  
Vol 7 (1) ◽  
pp. e30627 ◽  
Author(s):  
Karine Baumstarck ◽  
Jean Pelletier ◽  
Valérie Aghababian ◽  
Françoise Reuter ◽  
Irina Klemina ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Preliminary Results ◽  
Multiple Sclerosis Patients

scholarly journals Associations between Activity Pacing, Fatigue, and Physical Activity in Adults with Multiple Sclerosis: A Cross Sectional Study

2020 ◽  
Vol 5 (2) ◽  
pp. 43 ◽  
Author(s):  
Ulric S. Abonie ◽  
Femke Hoekstra ◽  
Bregje L. Seves ◽  
Lucas H. V. van der Woude ◽  
Rienk Dekker ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Perceived Risk ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Fatigue is common in people with multiple sclerosis (MS). Activity pacing is a behavioral way to cope with fatigue and limited energy resources. However, little is known about how people with MS naturally pace activities to manage their fatigue and optimize daily activities. This study explored how activity pacing relates to fatigue and physical activity in people with MS. Participants were 80 individuals (60 females, 20 males) with a diagnosis of MS. The participants filled in questionnaires on their activity pacing, fatigue, physical activity, and health-related quality of life, 3–6 weeks before discharge from rehabilitation. The relationships between the variables were examined using hierarchical regression. After controlling for demographics, health-related quality of life, and perceived risk of overactivity, no associations were found between activity pacing and fatigue (β = 0.20; t = 1.43, p = 0.16) or between activity pacing and physical activity (β = −0.24; t = −1.61, p = 0.12). The lack of significant associations between activity pacing and fatigue or physical activity suggests that without interventions, there appears to be no clear strategy amongst people with MS to manage fatigue and improve physical activity. People with MS may benefit from interventions to manage fatigue and optimize engagement in physical activity.

scholarly journals Quality of Life and Female Sexual Dysfunction in Croatian Women with Stress-, Urgency- and Mixed Urinary Incontinence: Results of a Cross-Sectional Study

Medicina ◽  
2019 ◽  
Vol 55 (6) ◽  
pp. 240
Author(s):  
Ivan Radoja ◽  
Dunja Degmečić
Keyword(s):  
Quality Of Life ◽  
Urinary Incontinence ◽  
Sexual Dysfunction ◽  
Female Sexual Dysfunction ◽  
Cross Sectional Study ◽  
Mixed Urinary Incontinence ◽  
Sectional Study ◽  
Cross Sectional ◽  
Significant Difference

Background and objectives: Urinary incontinence is defined as the involuntary leakage of urine. Studies have reported that the severity of urinary incontinence symptoms can cause decreased quality of life and female sexual dysfunction in women, but the association between the duration of the incontinence and the aforementioned disturbances has not been evaluated. The objective of this study was to evaluate the differences in the occurrence of decreased quality of life and female sexual dysfunction in Croatian women with urinary incontinence, with regard to the duration and subtype of urinary incontinence. Materials and Methods: We conducted a cross-sectional study from March 2017 to July 2018 at our neurourology and urodynamics outpatient clinic, among 120 women with urinary incontinence symptoms. Based on medical history, physical exam and urodynamic assessment, participants were divided into groups with stress-, urgency- and mixed urinary incontinence. Several quality of life and female sexual dysfunction questionnaires were used for evaluation. The differences between the three UI groups were tested by the Kruskal–Wallis test. All p values were two-sided. The level of significance was set to Alpha = 0.05. Results: The mixed urinary incontinence group had a significantly inferior quality of life (p = 0.003) and lower scores on the female sexual dysfunction questionnaires (p = 0.02). The longer the duration of incontinence King’s Health Questionnaire total score was worse (p = 0.003) and Female Sexual Function Index total score was worse (p < 0.001). Conclusions: Our results showed that there was a statistically significant difference in the occurrence of decreased quality of life and female sexual dysfunction considering the duration and subtype of incontinence in Croatian women.

scholarly journals The Influence of Self-Perception on Manipulative Dexterity in Adults with Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-8
Author(s):  
Rosa M. Martínez-Piédrola ◽  
Cristina García-Bravo ◽  
Elisabet Huertas-Hoyas ◽  
Patricia Sánchez-Herrera Baeza ◽  
Jorge Pérez-Corrales ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Daily Living ◽  
Negative Impact ◽  
Leisure Activities ◽  
Cross Sectional Study ◽  
Self Perception ◽  
Cross Sectional ◽  
Perceived Quality Of Life

Background. Multiple sclerosis is a disorder which causes a loss of functionality, affecting the person’s ability to perform activities of daily living, such as interpersonal interactions and relationship, dressing, self-care, or bathing, as well as having a negative impact on work and leisure activities. Aims. This study examined the relationship (correlational or associations/predictive) between self-perceived quality of life and performance of manipulative dexterity. Also, this study sought to measure predictors of dexterity. Study Design. A cross-sectional study from two associations of MS within the Community of Madrid, Spain. Methods and Procedures. A final sample of 30 people with multiple sclerosis. The outcome measures used were the ABILHAND questionnaire, the Purdue Pegboard Test, the Nine Hole Peg Test, and the Box and Block Test. Results. No significant correlations were found between dexterity and self-perception tests; however, correlations were found between perceived dexterity and quality of life ( p < 0.001 ). Scores for the ABILHAND questionnaire, which measures the perception of skills in daily living, predicted up to 60% of the variance in the dexterity tests. Conclusions. The results of this study suggest that interventions for improving the manipulative dexterity of people with multiple sclerosis should address the person’s perception of improving their manipulative dexterity and the perceived of quality of life, as both factors may influence manipulative dexterity.

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