The impact of self-perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients: results of a cross-sectional study

Abstract

Objective:To examine the impact of perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients.Design:Cross-sectional survey.Setting:Department of Neurology, University Medical Center Groningen, the Netherlands.Subjects:Multiple sclerosis patients.Main measures:World Health Organization Quality of Life – abbreviated version, Stigma Scale for Chronic Illness, Sense of Coherence Scale, background and disease-related questions.Results:In total, 185 patients (61% response rate) participated in the study with moderate to severe limitations. Stigma was highly prevalent but low in severity. Patients with a higher sense of coherence experienced a lower level of limitations (B = −0.063, P < 0.01) and less stigma (enacted stigma B = −0.030, P < 0.01; self-stigma B = −0.037, P < 0.01). Patients with a higher level of limitations experienced more stigma (enacted stigma B = 0.044, P < 0.05; self-stigma B = 0.063, P < 0.01). Patients with a higher sense of coherence experienced better quality of life (physical health B = 0.059, P < 0.01; psychological health B = 0.062, P < 0.01; social relationships B = 0.052, P < 0.01; environmental aspects B = 0.030, P < 0.01). Patients with a higher level of limitations experienced poorer quality of life (physical health B = −0.364, P < 0.01; psychological health B = −0.089, P < 0.05) and patients with more stigma also experienced poorer quality of life (self-stigma: physical health B = −0.073, P < 0.01; psychological health B = −0.089, P < 0.01; social relationships B = −0.124, P < 0.01; environmental aspects B = −0.052, P < 0.01, and enacted stigma: physical health B = −0.085, P < 0.10).Conclusion:Patients with less perceived limitations and stigma and a higher level of sense of coherence experienced better quality of life. Patients with a higher sense of coherence experienced a lower level of limitations and less stigma.

Adapting to Multiple Sclerosis Stigma Across the Life Span

“…However, other studies have reported nonsignificant bivariate associations between MS duration and stigma. 3,4 Given the complex association between…”

“…Over time, MS symptoms tend to progress and can lead to severe disability. 2 Most people with MS experience social stigma as a result of their MS at mild-to-moderate levels, 3,4 with potential implications for their health. Stigma occurs when people are labeled as different, separate, and of lower status based on some characteristic (such as MS), and are thus negatively stereotyped and/or discriminated against.…”

“…6 The stigma of MS in particular has been linked to poorer quality of life and depression. 3,7,8 People with MS report that stigma is a barrier to their daily functioning and resilience. 7,9 Stigmatizing social interactions and isolation are at odds with the need to belong, which is considered a core human need that is vital to well-being.…”

Assessing Stigma in Multiple Sclerosis

“…Stigma is a psychosocial challenge that negatively affects the physical and mental health of people living with MS. [5][6][7]21 In recent decades, there has been a major shift in the physician-patient relationship; patients are insisting on playing a more active role in decisionmaking processes related to their medical care. 22 Identifying stigma using easy-to-implement patient-reported instruments might be relevant in terms of greater patient engagement.…”

“…6 Individuals with more self-stigma also experienced poorer quality of life in a Dutch study using the World Health Organization quality-of-life measurement instrumentabbreviated version. 7 Perception of stigma was also associated with greater caregiver burden (odds ratio, 3.83; 95% CI, 1.84-7.96) in a survey of 530 patients with MS from Canada. 8 Understanding stigma in MS may be crucial for performing specific intervention strategies against the internalized cognitive, emotional, and behavioral impact of the negative attitudes of others on a patient with a chronic illness.…”