scholarly journals Stigma in Multiple Sclerosis: The Important Role of Sense of Coherence and Its Relation to Quality of Life

2021 ◽  
Author(s):  
Lydia Grothe ◽  
Matthias Grothe ◽  
Judith Wingert ◽  
Georg Schomerus ◽  
Sven Speerforck
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sense Of Coherence ◽  
Contributing Factors ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Promising Target ◽  
Enacted Stigma ◽  
Underlying Mechanisms

Abstract Background Anticipated and experienced stigma constitute important issues for patients with multiple sclerosis receiving adequate healthcare. Stigma is likely to be associated with lower quality of life in patients with multiple sclerosis, but the underlying mechanisms and contributing factors are unclear. Methods We conducted a cross-sectional survey among N = 101 patients with a diagnosis of multiple sclerosis in a German outpatient department. Patients completed questionnaires on enacted and self-stigma (SSCI-8), sense of coherence (SOC-L9) and quality of life (MusiQol). Age, sex, disease duration, disability or extent of limitations (EDSS), cognition (SDMT), depression (BDI-II) and fatigue (FSMC) were used as covariates in linear regression and mediation models. Results 57.3% of patients with MS reported having experienced stigmatization due to MS at least once. Fatigue (b = -0.199, p < 0.001), enacted stigmatization experience (b = -0.627, p = 0.010) and sense of coherence (b = 0.654, p < 0.001) were significant predictors for quality of life. The mediation analysis showed a partial mediation of the association between enacted stigma and quality of life by patients’ sense of coherence (direct effect: b = -1.042, t = -4.021, p < 0.001; indirect effect: b = -0.773, CI = -1.351—-0.339. The association of self-stigma with quality of life was fully mediated by sense of coherence (b = -1.579, CI = -2.954—-0.669). Conclusion Patients with multiple sclerosis are affected by stigma, which is associated with lower quality of life. Sense of coherence is a potentially important mediator of stigma and represents a promising target to refine existing stigma interventions and improve the quality of life in these patients.

Neuropsychiatric changes during the COVID-19 pandemic in multiple sclerosis patients

2020 ◽  
Vol 78 (9) ◽  
pp. 570-575
Author(s):  
Caner Feyzi DEMIR ◽  
Furkan BILEK ◽  
Ferhat BALGETIR
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sleep Quality ◽  
The Body ◽  
Assessment Tools ◽  
Survey Study ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Multiple Sclerosis Patients

ABSTRACT Background: This study reported on a variety of psychological reactions related to anxiety, sleep quality, depression, fatigue, and quality of life in individuals with multiple sclerosis (MS), related to the Covid-19 quarantine experience. Objective: The aim of this study was to investigate the neuropsychiatric effects of the COVID-19 pandemic in MS patients and to analyze the risk factors contributing to psychological stress. Methods: The study was designed as a prospective, cross-sectional survey study. Multiple assessment tools that are used in neurological practice, including Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Fatigue Impact Scale (FIS), Pittsburgh Sleep Quality Index (PSQI), and Multiple Sclerosis Quality of Life-54 (MSQOL-54) were administered prospectively both during the early and the peak stages of COVID-19 outbreak (ESO and PSO, respectively). The survey forms were designed using SurveyMonkey and the participants were participating in the survey via a web link and QR code. Results: Fifty patients were included in the study. BDI scores, PSQI and FSI measurements, cognitive and social subscale scores and total FIS score, MSQOL-54 measurements, physical and mental subscale scores, and total MSQOL-54 score at PSO were significantly different than those at ESO. The body mass index values of the patients increased significantly at PSO compared to those measured at ESO. Conclusions: The results provide a basis for the development of psychological interventions that could minimize the prevalence of sleep disorders and depression and could improve patients’ quality of life during the outbreak.

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.

Sign in / Sign up

Export Citation Format

Share Document