Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis

Mauriño, Jorge; Martínez-Ginés, María Luisa; García-Domínguez, J M; Solar, María D; Carcelén‐Gadea, María; Arés-Luque, Adrián; Ballabriga, Jordi; Navarro-Cantó, Laura; Medrano, Nicolás; Honan, Cynthia

doi:10.1016/j.msard.2020.102046

Cited by 30 publications

(31 citation statements)

References 40 publications

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“… 50 The experience of stigma seriously affected the ability of patients to work, seek outside help and communicate with others. 18 , 51 , 52 This study confirmed the direct predictive effect of stigma on SAD. The intermediary test results showed that the total effect of stigma on SAD was 0.454.…”

Section: Discussionsupporting

confidence: 80%

Psychological Resilience as the Mediating Factor Between Stigma and Social Avoidance and Distress of Infertility Patients in China: A Structural Equation Modeling Analysis

Zhao¹,

Huangfu²,

Li³

et al. 2022

PRBM

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Background Stigma, social avoidance and distress may seriously affect the quality of life of infertility patients. Psychological resilience has been proved to effectively combat psychological stress. This study aimed to explore the mediating role of psychological resilience between stigma and social avoidance and distress (SAD) in females with an unfulfilled wish for a child. Methods Stigma Scale, Social Avoidance and Distress Scale (SADS), and Psychological Resilience Scale were used to evaluate 266 females with infertility. Structural equation model was used to test the mediating effect of psychological resilience on the relationship between stigma and SAD. Results The SADS, stigma scores, and psychological resilience scores of 266 females with infertility were 13.36 ± 5.77, 77.84 ± 16.91, and 58.84 ± 12.24 points, respectively. The stigma scores were positively correlated with SADS, and negatively correlated with psychological resilience scores. The psychological resilience scores were negatively correlated with SADS. Psychological resilience played a partially mediating role between the stigma and SAD of infertility patients, and the mediating effect accounted for 25.5% of the total effect. Conclusion Psychological resilience had a partial mediating effect on the relationship between stigma and SAD, and could reduce the negative effect of stigma on the development of SADS. Therefore, positive psychological interventions improving psychological resilience might help to reduce stigma and improve SAD in infertility patients.

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Section: Discussionsupporting

confidence: 80%

Psychological Resilience as the Mediating Factor Between Stigma and Social Avoidance and Distress of Infertility Patients in China: A Structural Equation Modeling Analysis

Zhao¹,

Huangfu²,

Li³

et al. 2022

PRBM

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“…15 Almost eighty percent of a sample of 55 patients with primary progressive MS reported some degree of stigmatization at baseline and one year later. 16,36 Increased baseline SSCI-8 scores were associated with a higher risk of depression (OR=1.21, p=0.007) and moderate-to-severe depression (OR=1.37, p=0.003). 36 Patients with rare diseases show even worse quality of life compared to the general population and people with common chronic diseases.…”

Section: Discussionmentioning

confidence: 98%

“…Perception of stigma has been recently explored in multiple sclerosis (MS). [13][14][15][16][17] Different studies showed a prevalence of perceived stigma of 20 and 80% in patients with relapsing-remitting and primary progressive MS, respectively. 16,17 Even in patients with low physical disability, stigma was associated with poor quality of life, depression, and unemployment.…”

Section: Introductionmentioning

confidence: 99%

“…[13][14][15][16][17] Different studies showed a prevalence of perceived stigma of 20 and 80% in patients with relapsing-remitting and primary progressive MS, respectively. 16,17 Even in patients with low physical disability, stigma was associated with poor quality of life, depression, and unemployment. 15,17,18 Depression and psychological distress affect subjective well-being in patients with NMOSD.…”

Section: Introductionmentioning

confidence: 99%

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Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder

Meca-Lallana¹,

Prefasi²,

Pérez‐Miralles³

et al. 2021

PPA

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Background Perception of stigma was associated with low self-esteem, psychological problems, and decreased health-seeking behavior among patients with different neurological disorders. The purpose of this study was to assess stigmatization and its impact in patients with neuromyelitis optica spectrum disorder (NMOSD). Methods A non-interventional study was conducted at thirteen neuroimmunology clinics in Spain. Patients with a diagnosis of NMOSD (2015 Wingerchuk criteria) were included. The 8-item Stigma Scale for Chronic Illness (SSCI-8), the Expanded Disability Status Scale (EDSS), the 29-item Multiple Sclerosis Impact Scale (MSIS-29), the Beck Depression Inventory-Fast Screen (BDI-FS), the MOS Pain Effects Scale (MOS-PES) and the Fatigue Impact Scale for Daily Use (D-FIS) were used to assess the perception of stigma, disability, quality of life, mood, pain, and fatigue, respectively. Associations between outcome measures were analyzed using Spearman’s rank correlation. Results Seventy-one patients were studied (mean age: 47.4 years ± 14.9, 81.7% female, mean time since disease onset: 9.9 years ± 8.1). The median EDSS score was 3.0 (interquartile range 1.5, 4.5). Stigma prevalence was 61.4% (n=43). Thirty-one patients (43.6%) had depression. The SSCI-8 score showed a significant correlation with both physical (rho=0.576, p<0.0001) and psychological (rho=0.608, p<0.0001) MSIS-29 scales scores, EDSS score (rho=0.349, p=0.0033), BDI-FS score (rho= 0.613, p<0.0001), MOS-PES score (rho= 0.457, p<0.0001), and D-FIS score (rho=0.556, p<0.0001). Conclusion Stigma is a common phenomenon affecting over 6 out of 10 patients with NMOSD. Understanding stigma may be useful to develop educational strategies improving NMOSD knowledge.

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“…8 Work-related problems or even unemployment due to MS are common in this population even when physical disability is low. 9 Finally, treatment for relapses [10][11][12] as well as long-term immunotherapies 13,14 can pose a significant burden on people with MS.…”

Section: Introductionmentioning

confidence: 99%

The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life

Beckmann¹,

Heesen

Augustin³

et al. 2021

International Journal of MS Care

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Background: Treatment- and work-related aspects have been neglected in health-related quality of life (HRQOL) measures in multiple sclerosis (MS). We aimed to develop a brief instrument covering all important impairment-, activity-, participation-, and treatment-related aspects for use in research and practice. Methods: The 27-item Multiple Sclerosis Quality of Life Questionnaire (MS-QLQ27) was developed using open item collection, a multidisciplinary expert panel, and cognitive pretesting. It was evaluated for reliability, construct validity, and responsiveness with 100 patients presenting with relapse (84 at follow-up ~14 days later). Construct validity was analyzed by correlating the MS-QLQ27 with the disease-specific Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and generic HRQOL instuments. The Expanded Disability Status Scale (EDSS) was used to analyze known-groups validity. Responsiveness was determined as the correlation of changes in MS-QLQ27 scores with changes in validation criteria. Results: Internal consistency was high (Cronbach α = 0.94 at baseline and 0.93 at follow-up). Convergent validity was supported by direction and magnitude of associations with disease-specific and generic instruments. Correlations with change in convergent criteria were strong, indicating responsiveness. The HAQUAMS showed the strongest associations with the MSQLQ27. The MS-QLQ27 showed the highest effect size compared with other patient-reported outcomes and the EDSS. It successfully distinguished between levels of disease severity. Conclusions: These results indicate that the MS-QLQ27 is a reliable, valid, and highly responsive instrument for assessing HRQOL during relapse evolution in MS. Its advantages are that it is brief yet comprehensive, covering work- and treatment-related aspects not addressed in previous measures.

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Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis

Cited by 30 publications

References 40 publications

Psychological Resilience as the Mediating Factor Between Stigma and Social Avoidance and Distress of Infertility Patients in China: A Structural Equation Modeling Analysis

Psychological Resilience as the Mediating Factor Between Stigma and Social Avoidance and Distress of Infertility Patients in China: A Structural Equation Modeling Analysis

Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder

The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life

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