scholarly journals Perception of stigma in patients with primary progressive multiple sclerosis

2019 ◽  
Vol 5 (2) ◽  
pp. 205521731985271
Author(s):  
Francisco Pérez-Miralles ◽  
Daniel Prefasi ◽  
Antonio García-Merino ◽  
José R Ara ◽  
Guillermo Izquierdo ◽  
...  

Stigma associated with neurological disorders may contribute to a poor health-related quality of life. However, limited information is available in primary progressive multiple sclerosis. We investigated the presence and impact of stigma in patients with primary progressive multiple sclerosis. A non-interventional, cross-sectional study was conducted. A total of 55 primary progressive multiple sclerosis patients were studied (mean age 55.8±9.5 years, 56.4% male). The median Expanded Disability Status Scale score was 5.5 (4.0–6.5). Stigma prevalence was 78.2% ( n=43). Twenty-four patients (43.6%) were classified as depressed. Scores on the eight-item Stigma Scale for Chronic Illness correlated with physical (rho=0.464, p<0.001) and psychological (rho=0.358, p=0.007) 29-item Multiple Sclerosis Impact Scale subscores. Stigma predicted concurrent depression (odds ratio=1.13; p=0.046). Stigma was highly prevalent with a detrimental effect on quality of life and mood in primary progressive multiple sclerosis.

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  

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.


PLoS ONE ◽  
2012 ◽  
Vol 7 (1) ◽  
pp. e30627 ◽  
Author(s):  
Karine Baumstarck ◽  
Jean Pelletier ◽  
Valérie Aghababian ◽  
Françoise Reuter ◽  
Irina Klemina ◽  
...  

BMC Neurology ◽  
2011 ◽  
Vol 11 (1) ◽  
Author(s):  
Karine Baumstarck-Barrau ◽  
Marie-Claude Simeoni ◽  
Françoise Reuter ◽  
Irina Klemina ◽  
Valérie Aghababian ◽  
...  

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  

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.


2021 ◽  
Vol 7 (1) ◽  
pp. 205521732199604
Author(s):  
Sabina David Ruban ◽  
Claudia Christina Hilt ◽  
Thor Petersen

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.


2017 ◽  
Vol 653 ◽  
pp. 159-162 ◽  
Author(s):  
Sabrina Giacoppo ◽  
Oxana Bereshchenko ◽  
Stefano Bruscoli ◽  
Carlo Riccardi ◽  
Placido Bramanti ◽  
...  

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