Content

Issues

Research

Permissions

Community Content

Videos and Multimedia

IJMSC Awards

For Authors

Information for Authors

Manuscript Submission

Patient Consent Form

About IJMSC

Aim and Scope

Ethics

Editorial Board

Peer Review

Contact Us

Home

Advertising

IJMSC

1rem

Authors

Acceptability and Feasibility of the English Version of Elevida, a Self-Guided Online Fatigue Intervention for People With Multiple Sclerosis

Social support is crucial for persons with multiple sclerosis (MS). We sought to analyze differences in perceived social support in persons with MS vs controls; to study associations between perceived social support, clinical measures, and health-related quality of life (HRQOL) variables in persons with MS; and to establish a predictive value of perceived social support for HRQOL.

We studied 151 persons with MS (mean ± SD: age, 42.01 ± 9.97 years; educational level, 14.05 ± 3.26 years) and 89 controls (mean ± SD: age, 41.46 ± 12.25 years; educational level, 14.60 ± 2.44 years) using the Medical Outcomes Study Social Support Survey (MOS-SSS), Expanded Disability Status Scale, Fatigue Severity Scale, Beck Depression Inventory, and Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire. Parametric and nonparametric statistical methods were used accordingly; 

Persons with MS exhibited lower scores on the MOS-SSS's overall support index (

 = .04) and on each functional subscale (

 < .05). No significant differences were found on the social support structural component (

 > .05). Significant associations were observed between social support and depression and fatigue (

 < .05). Multiple regression analysis showed all 4 tested models contributed to HRQOL-explained variance (41%–47%). The emotional/informational support model explained the most HRQOL variability (47%).

Persons with MS perceived reduced social support, presenting lower functional scores than controls. Perceived social support proved to be a predictor of HRQOL. These findings should be considered during therapeutic treatment.

Social support is a multidimensional concept referring to the emotional and financial resources provided to an individual by their environment.

 Social support plays a crucial role in individual health by facilitating adaptive behaviors when faced with stressful situations.

 Among the numerous proposed models of social support, structural and functional approaches are the most frequently used. The structural perspective addresses the size, density, and characteristics of the members that make up an individual’s social network, and the functional approach focuses on the effects of social interaction on the individual.

 Authors describe different types of functional support; the types most referenced in the literature are emotional support (eg, feeling loved and cared for), instrumental support (eg, financial support, access to food and clothing), and informational support (eg, receiving advice to solve problems).

The direct and positive effects of social support on physical and mental health in patients with chronic illnesses have been thoroughly studied; social support acts as a buffer, protecting individuals against the negative effects of disease-related stressful events.

 Multiple sclerosis (MS) is a chronic neurologic disease that generates a plethora of physical, cognitive, and emotional symptoms

 that impact many components of a patient’s quality of life.

 Social support plays a pivotal role in a patient’s ability to cope with the disease and counteract the effects of social isolation.

 Previous MS research reports positive effects of social support on symptoms such as anxiety and depression,

 as well as improved health-related quality of life (HRQOL) in persons with MS who experience greater social support.

 A recent study observed that persons with MS with lower social support exhibited increased suicidal thoughts, highlighting social support’s mediating role on suicidal ideation.

 Perceived social support was also identified as a predictor of physical disability in this population.

 Persons with MS with greater social support report reduced fatigue symptoms.

 Studies focusing on the structural social support network components reported a link between support provided by significant others (eg, coworkers, health providers, other persons with MS) and physical health, whereas social support provided by family members and friends was mostly associated with mental health.

Social support is usually assessed through self-perception questionnaires.

 In recent years, MS research has shifted toward a more patient-centered approach, which is why patient-reported outcome measures have been gaining similar if not more relevance than other clinical or neuroimaging outcomes.

 In addition to measuring outcomes, patient-reported outcome measures are designed to identify a patient’s perceptions, helping physicians understand the patient’s experience outside the clinical setting.

Despite the growing clinical interest in the perceived social support of persons with MS, there are few publications on its relationship to MS characteristics and its effect on HRQOL. Given the availability of local data on this subject, the objectives of the present study were to analyze differences in perceived social support in persons with MS vs controls; to study associations among perceived social support, clinical measures, and HRQOL in persons with MS; and to establish a predictive value of perceived social support for HRQOL.

A total of 151 persons with MS were recruited from 2 MS clinics in Buenos Aires, Argentina, through incidental nonprobabilistic sampling. All patients attending a neurology consultation that met the inclusion criteria were invited to participate in the study. The control group consisted of 89 sex-, age-, and education-matched volunteers with no MS diagnosis. All participants provided their written informed consent for the study as approved by the institutional ethics committees of Ramos Mejia Hospital and Buenos Aires University.

Inclusion criteria for persons with MS were a clinically defined MS diagnosis

 and age 18 to 60 years at the time of recruitment. Exclusion criteria for this group were a current or previous neurologic disorder other than MS, a history of psychotic disorder, a history of alcohol and/or substance dependence, current substance abuse, a history of relapse or corticosteroid administration in the 4 weeks preceding the study, and the presence of significant cognitive impairment (

 score < −2 on the 3 subtests of the Brief International Cognitive Assessment for MS,

). Inclusion criteria for the control group were absence of clinical or neurologic disorders that could impact cognitive performance, no history of alcohol or substance dependence, no current substance abuse, and a Mini-Mental State Examination

The Argentine adaptation of the Medical Outcomes Study Social Support Survey (MOS-SSS)

 was implemented to assess perceived social support. The MOS-SSS is a brief, multidimensional survey that explores the structural components (eg, social network size) and functional dimensions of social support. It is composed of 20 items ranging from 1 (never) to 5 (always) on a Likert scale. The first item asks about social network size (ie, number of friends and family members the patient can rely on); the remaining items explore 3 social support dimensions: emotional/informational support (ie, information the patient can use to anticipate and face problems, such as suggestions and advice), affective support (ie, true expressions of affection, love, or empathy), and instrumental support (ie, access to material resources such as financial assistance, food, and clothing).

 A higher score on the MOS-SSS represents greater perceived social support. Questionnaire structure is illustrated in 

The Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire was used to assess HRQOL.

 The MusiQoL is a multidimensional self-report scale composed of 31 items targeting 9 HRQOL dimensions: activities of daily living; psychological well-being; symptoms; friendships; family relationships; sentimental and sexual life; and coping, rejection, and satisfaction with health care. In addition to the dimension scores, MusiQoL offers a global index score. All items follow a 6-point Likert structure ranging from 1 (never/not at all) to 5 (always/very much) and 6 (not applicable). Higher scores indicate higher HRQOL.

Depression symptoms were screened using the Beck Depression Inventory-II (BDI-II)

 locally adapted by Brenlla and Rodriguez.

 The BDI-II is a 21-item self-report questionnaire with a 4-point Likert scale that targets patients’ feelings and perceptions in the previous 2 weeks. A higher score indicates greater depressive symptoms.

Fatigue symptoms were quantified by the Argentine version of the Fatigue Severity Scale (FSS),

 a self-report scale composed of 9 items, each presenting possible answers of increasing intensity on a 1- to 7-point Likert scale. A patient’s answers are to reflect how they felt during the previous 2 weeks, with a higher score indicating greater fatigue symptoms.

Global disability was assessed using the Expanded Disability Status Scale (EDSS),

 the most widely used disability scale in MS. The EDSS is based on measures of impairment on 8 functional systems: visual, sensory, pyramidal, cerebellar, brainstem, bowel and bladder, cerebral, and other. Scoring consists of 20 “half-points” that produce a total score that ranges from 0 to 10 points.

 was administered only to the control group to screen for dementia and to verify a minimal level of instructional understanding. This 30-point screening technique consists of a series of tests to assess global cognitive performance: spatial and time orientation, memory (registration and delayed recall), attention, language (oral and written comprehension and expression), praxis, and visuospatial skills.

Data were analyzed using IBM SPSS Statistics for Windows, version 20.0 (IBM Corp). Descriptive analyses were performed for all included variables.

Differences in sex, age, level of education, and level of social support between persons with MS and controls were calculated using χ

 tests or Fisher exact tests for categorical variables. 

 tests were used for continuous variables. Bivariate correlations between social support and clinico-demographic variables and between social support and HRQOL measures were investigated for the persons with MS.

Finally, multiple linear regression analyses were performed using the MusiQoL global index scores as the dependent variables. Independent variables were clinical scores (EDSS, FSS, BDI-II) and all MOS-SSS social support scores (global index score, emotional/informational support score, affectionate support score, and instrumental support score). The analyses were used to constitute 4 different predictive models of HRQOL. A 

 value was set at .05 for all statistical analyses.

The persons with MS group was 65.6% women with a mean ± SD age of 42.01 ± 9.97 years and educational level of 14.05 ± 3.26 years. The control group was 70.8% women with a mean ± SD age of 41.46 ± 12.25 and educational level of 14.60 ± 2.44 years. Sex analysis showed no significant differences between groups on age and educational level (sex: χ

The persons with MS group was 88% relapsing-remitting MS (n = 133), 7% primary progressive MS (n = 11), and 4% secondary progressive MS (n = 7). The mean ± SD EDSS score was 2.88 ± 2.10, and there was a mean ± SD illness duration of 12.46 ± 10.07 years. Mean ± SD depression score on the BDI-II was 13.61 ± 9.83 and perceived fatigue score on the FSS was 4.15 ± 2.27.

There were significant differences in perceived social support between persons with MS and controls as measured by the MOSSSS. Persons with MS displayed significantly lower scores on the overall social support index (

 = .04) and on all functional subscales: emotional/informational support (

 = .03). No significant differences were observed between groups in the number of friends (

Correlation analyses between social support measures and demographic and clinical variables for people with MS showed that the overall social support index and emotional/informational support and affectionate support subscales were associated with depression and fatigue measures (

 < .05). No statistically significant correlations were observed between social support and the remaining demographic and clinical variables. On the other hand, the overall index and all subscale scores for social support were associated with HRQOL (

Multiple regression analyses showed that the 4 tested models contributed to HRQOL-explained variance (41%–47%); the emotional/informational social support model explained the most variance (47%). Fatigue and depression resulted in significant predictors in all models, as well as all social support scores. Global disability, as measured by the EDSS, was not a significant predictor of HRQOL (

The aim of the present study was to analyze perceived social support in persons with MS by studying related variables and analyzing their effect on quality of life. Comparisons between persons with MS and controls regarding perceived social support showed that persons with MS obtained significantly lower scores on the overall social support index and all the functional subscales on the MOS-SSS: emotional/informational support, affective support, and instrumental support. These results are in line with previous findings.

 Note that this study is the first to compare the performance of persons with MS and controls on the MOS-SSS, taking into account the functional and structural components of social support.

 Although there were no significant differences between groups in the number of friends or family members, it is important to highlight that the present study is the first to publish data on the structural components of the social support network as collected by the MOS-SSS. Many authors have studied different types of relationships (friends, family members, significant others, coworkers) that provide social support,

 but the number of people within the social support network has not been investigated. This work’s contribution proposes that although persons with MS rely on the same number of relationships for social support as individuals with no MS diagnosis, it is the quality of these relationships that seems to be affected in persons with MS.

Results indicate that persons with MS with higher depression and fatigue symptoms obtained lower scores on social support measures, both on the overall index and the 3 functional subscales. High levels of depression have already been associated with low social support,

 even in longitudinal studies such as that of de la Vega et al,

 in which persons with MS reporting reduced social support also presented with increased depressive symptoms at a 6-year follow-up visit. Other authors found this relationship only in persons with MS perceiving less support from their friends.

 A longitudinal study that followed a significant number of patients found that higher depression scores at baseline were associated with increases in reported levels of social support throughout the study, suggesting that persons with MS with higher depression scores may be recruiting more support over time as a means of coping.

 Regarding fatigue, similar findings have been reported in the literature: Persons with MS with greater social support also reported fewer fatigue symptoms.

 Other authors, however, did not find significant associations.

 Finally, although some research found a significant relationship between social support and physical disability,

 no such link was observed in the present study. This absence of correlation could be attributed to the small number of persons with high disability and progressive MS subtypes in the present sample.

These findings exhibit a strong association between perceived social support and several HRQOL dimensions. In addition, perceived social support proved to be a predictor of HRQOL. Among the different types of functional social support, emotional/informational support correlated the most with HRQOL, meaning that individuals who receive more suggestions and advice to anticipate and solve problems experience greater HRQOL. These results are in line with those of Costa et al,

 who also studied the MOS-SSS among persons with MS and found the same direct correlation with HRQOL. This study identifies psychological support as having the greatest effect on HRQOL; however, items on the MOS-SSS version used were grouped into 2 subscales, as opposed to the 3 functional subscales obtained by the factorial analysis of the MOS-SSS Argentine version. Other papers also described direct associations between HRQOL and social support,

 in which support provided by family members and friends was more related to the psychological HRQOL components and support offered by significant others was more related to the physical HRQOL components. Although this distinction could not be explored with the scale used in the present study, significant correlations were identified between the number of friends and family members in an individual’s social support network and the HRQOL global index as well as psychological well-being and illness symptoms. In this line, the friendship and family relationship dimensions of the HRQOL scale were associated with greater social support.

The present study is cross-sectional: No causality can be inferred from the reported correlations. In addition, the sample was mostly composed of individuals with relapsing-remitting MS and low disability, limiting generalizability to all those with MS. It would be important to include patients with greater disability and progressive MS forms in future research considering that previous studies have shown that the extent of social support was more comprehensive in patients at advanced stages of the disease.

 Nonetheless, the present study underscores the importance of social support in the design of effective interventions aimed at improving quality of life for persons with MS. Interventions based on social support generally involve direct interaction with the person’s social environment, and the positive effects are the result of the resources that are exchanged during that interaction (ie, information, tangible help, companionship, emotional support, education). The challenge for the health professional lies, therefore, in the ability to adjust and enhance the resources of the environment of the person with MS to strengthen adherence to treatment and adequate coping with the disease.

Persons with MS perceive poor social support, which is associated with symptoms of depression and fatigue and predicts worse quality of life. Considering that adequate social support is a factor that has a protective or beneficial effect on multiple parameters related to health, it is necessary to assess this aspect in the daily treatment plan.

Patients with multiple sclerosis obtained significantly lower perception of social support scores than controls.

Poorer social support is associated with poorer health-related quality of life.

It is important to consider the network and quality of social support to ensure more adequate treatment.

 The authors declare no conflicts of interest.

 Preliminary data from this study were presented as a poster at the MSVirtual2020: 8th Joint ACTRIMS-ECTRIMS Meeting, September 11-13, 2020.

Relevance and Impact of Social Support on Quality of Life for Persons With Multiple Sclerosis

 To access the article and evaluation online, go to 

 The target audience for this activity is physicians, advanced practice clinicians, nursing professionals, psychologists and other mental health professionals, social workers, and other health care providers involved in the management of patients with multiple sclerosis (MS).

Recognize the unmet need for effective and direct intervention strategies for individuals with MS that correctly target specific stigma type.

Describe the 3 major stigma types in order to be able to select a stigma instrument that allows the clinician to differentiate among experienced, anticipated, and internalized stigma.

In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Intellisphere, LLC. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team.

This activity was planned by and for the health care team, and learners will receive 1.0 Interprofessional Continuing Education (IPCE) credit for learning and change.

 The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

: The CMSC designates this enduring material for 1.0 contact hour of nursing continuing professional development (NCPD) (none in the area of pharmacology).

: This activity is awarded 1.0 CE credits.

 As a Jointly Accredited Organization, the CMSC is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this course receive 1.0 general continuing education credits.

 It is the policy of the Consortium of Multiple Sclerosis Centers to mitigate all relevant financial disclosures from planners, faculty, and other persons that can affect the content of this CE activity. For this activity, all relevant disclosures have been mitigated.

, editor in chief of the International Journal of MS Care (

), has served as physician planner for this activity. He has disclosed no relevant financial relationships. 

, associate editor of IJMSC, has disclosed no relevant financial relationships. Author 

, has disclosed a financial relationship with Adelphi Values (employee). Authors 

Brian C. Healy, PhD, Jonathan D. Zurawski, MD

Tarun Singhal, MBBS, MD, Sydney B. Kehoe, BS

 have disclosed no relevant financial relationships.

The staff at IJMSC, CMSC, and Intellisphere, LLC who are in a position to influence content have disclosed no relevant financial relationships. 

, continuing education director CMSC, has served as a planner and reviewer for this activity. She has disclosed no relevant financial relationships.

Release Date: May 1, 2024; Valid for Credit through: May 1, 2025

(1) Review the continuing education information, including learning objectives and author disclosures.

(3) Complete the evaluation, which is available at 

Statements of Credit are awarded upon successful completion of the evaluation. There is no fee to participate in this activity.

 This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Intellisphere, LLC do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Intellisphere, LLC.

 Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.

Stigma is an undesired differentness associated with a particular characteristic or condition that distinguishes a person as being outside the norm and cueing stereotypes. Stigma is common in people with multiple sclerosis (MS) and is associated with several disease variables including disease duration, age, age of onset, and disease course. Stigma is also associated with psychological and psychosocial variables such as depression, anxiety, and quality of life. This article reviews our current understanding of stigma in people with MS with a focus on the various stigma types including anticipated, experienced, and internalized stigma, and the lack of consistent definitions across studies. It also describes the 7 instruments that are most commonly used to measure stigma in people with MS, and the limitations of each measure. We conclude that a better understanding of stigma that includes standard definitions of stigma types could lead to more direct intervention strategies aimed at reducing particular stigma concepts and resulting in improved health-related quality of life in people with MS.

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system that is characterized by early neurological relapses and risk for transition to a progressive disease phase where gradual disability may accrue.

 It is the most common nontraumatic cause of disability in young adults with onset typically occurring in young to middle adulthood.

 Approximately 85% of people with MS are diagnosed with relapsing-remitting MS (RRMS), and 15% are diagnosed with a primary progressive form of the disease (PPMS).

 Within 10 years, approximately half of those with RRMS experience progressive worsening of symptoms that is consistent with secondary progressive disease.

 Although many people with MS may initially have clinical recovery from early neurological attacks, disability tends to accrue over time and many individuals develop visible symptoms (eg, tremors, poor balance, and loss of coordination) as their disease progresses.

 describes stigma as an undesired differentness or flaw, often associated with a particular characteristic, quality, or condition (such as race, religion, mental illness, physical disability, or chronic disease) that often cues stereotypes and marks a person as outside the norm or different from the majority.

 may use this mark of disgrace to identify and disaffiliate from 

 This process of identifying and labeling a person as different from the majority and then dismissing or treating them differently is a phenomenon Goffman calls stigmatization.

Stigma is characterized by cognitive, emotional, and behavioral components that are reflected by both experiences and attitudes.

 stigma refers to the stigma one may face in interpersonal interactions; this includes discriminatory attitudes or behaviors from other people because of a person's stigmatized condition. 

 stigma is an intrapersonal experience, chiefly involving one's fear of facing discrimination from others in the future and the internalized sense of shame associated with having a quality that others deem inferior.

Early views of stigma held that felt stigma stemmed from enacted stigma.

 However, studies have shown that felt stigma does not necessarily originate from enacted stigma since it can exist in the absence of enacted stigma and can even be more prevalent than enacted stigma.

 Both types operate independently of each other and capture distinct elements of stigma. Scambler and Hopkins

 found that felt stigma had a stronger impact on well-being than enacted stigma. They also found that the 2 main components of felt stigma, ie, fear of discrimination and feelings of shame, had different relationships with overall well-being.

 These findings suggest that felt stigma may be too broad and that the 2 elements of felt stigma should be recognized as distinct types of stigma.

More recent studies on stigma in people with chronic illnesses support the idea that enacted stigma, fear of discrimination, and feelings of shame are 3 distinct stigma types.

 Although various terminologies have been used in the literature, most of the work done on stigma in MS can be condensed into these 3 categories labeled by Earnshaw and Quinn

Early studies on stigma in MS were primarily qualitative in nature. These studies focused on the different ways one may experience stigma.

 These studies also addressed identity adjustment after an MS diagnosis.

Stigmatization from others may be purposeful or unintentional.

 Purposeful discrimination consists of malevolent treatment of people with MS and may occur in the form of excluding, rejecting, blaming, humiliating, or avoiding.

 Additionally, others’ embarrassment, discomfort, or lack of knowledge on how to conduct themselves or act around people with MS can result in inadvertent or ignorant discrimination. This can take the form of either staring directly or avoiding eye contact altogether.

 Stigma toward people with MS may also emerge from well-intentioned actions like ignoring or overemphasizing someone's condition.

 Ignoring occurs when someone acts as if a person's stigmatized condition makes them no different from anyone else, undermining the difficulties individuals with a chronic illness face.

 Overemphasizing occurs when one is excessively attentive toward a person's condition, unintentionally serving as a constant reminder of their differentness and possibly making them feel incompetent.

Identity adjustment after an MS diagnosis typically includes a loss and re-formation of identity.

 People with MS may experience negative reactions to their initial diagnoses and may respond with negative feelings like denial, diminished confidence, a period of withdrawal, concealment, and avoidance of group membership with other people who have MS.

 However, many people with MS eventually reach a level of disability when their symptoms change from mostly invisible to visible—a transition that often forces them to integrate the diagnosis into their identity.

In addition to being forced into accepting a potentially stigmatized identity, some people with MS also may adjust by seeking more optimistic information about MS, accepting social support from others, and developing strategies to cope with symptoms and limitations.

 One study found that over the course of several years, people with MS increasingly accepted their new identities, reported reduced psychological distress, and socialized primarily with members of the MS community, suggesting that there may be psychological relief in coming to terms with the diagnosis.

Beginning in the mid-2010s, MS researchers began publishing quantitative research on stigma. Areas of investigation included the prevalence and severity of stigma in MS and associations between stigma and clinical and other psychological variables.

The studies use various stigma measures and the terms 

, to refer to stigma and stigma types. These labels align with the experienced, anticipated, and internalized stigma types mentioned above to varying degrees. 

 provides a summary of stigma types, measures, and limitations. The relationships between stigma types by instrument are shown in the FIGURE with additional information provided in 

Prevalence and Severity of Stigma in MS and Associations With Clinical Characteristics 

Depending on the study, stigma prevalence rates in people with MS range from 57%

 of participants reporting having experienced stigmatization at least once. Other studies found that around 70% to 80% of people with MS experience stigma.

 Numerous studies also found that most people with MS experienced stigma, generally at low to moderate levels.

 Compared to other diseases, people with MS and Parkinson disease reported lower levels of stigma than patients with other neurologic diseases, including stroke, epilepsy, and amyotrophic lateral sclerosis.

 Despite generally low levels of stigma in MS broadly, some people with MS experience significant stigma,

 including those with greater disability,

 Of these factors, level of disability was most closely associated with the level of stigma experienced.

 Additionally, since greater disability was associated with longer disease duration, older age, and progressive forms of MS, disability may confound their relationships with stigma.

 found that those with longer disease duration appear to experience less stigma after adjusting for covariates like disability and age.

 found that people with MS experience more anticipated and isolation stigma compared to internalized stigma. Isolation stigma is an individual's sense of exclusion and ostracism because of their disease. The study also found internalized stigma to be associated with younger ages and isolation stigma to be associated with greater impairment. However, another study using a similar scale found greater impairment, longer disease durations, and older ages to be related to both anticipation and isolation stigma.

Associations Between Stigma and Clinical and Psychosocial Variables in MS 

Depression is common in people with MS, with prevalence rates 2 to 5 times higher than those found in the general population.

 Several studies examining the relationship between stigma, depression, and anxiety found that greater felt stigma was associated with more depression and anxiety symptoms; higher levels of stigma were associated with increased rates of clinical depression (equivalent to major depressive disorder); and greater perceived discrimination was related to greater depression severity.

 measured levels of stigma and depression at 2 separate time points, 1 year apart. At each time point, people with MS who reported higher levels of stigma also reported more depression symptoms and were more likely to meet diagnostic criteria for clinical depression. Additionally, higher baseline stigma predicted worse depression a year later, even after controlling for worsening disability during that year and depression level at baseline.

 These findings suggest that stigma may predict depression over time.

Some authors suggest that the concepts of 

psychological reserve, disability identity

 may help explain patterns of stigma and depression in people with MS. Psychological reserve is a view of the world that comprises social support, sense of belonging, and sense of autonomy

 and helps people deal with the stressors they encounter.

 found that stigma more strongly predicted depression at lower levels of psychological reserve, indicating that people with MS with higher levels of psychological reserve may be better protected from stigma than those with fewer resources. Another study found that stronger disability identity, the acceptance and integration of one's disabled status and group membership into one's identity, predicted lower depression and anxiety in people with MS,

 matching the qualitative findings that, over time, people with MS assumed their new identities and experienced less psychological stress.

 Conversely, people with MS who display cognitive fusion, an inability to separate oneself from one's own thoughts, may be more susceptible to worse psychosocial outcomes of stigma, such as greater depression and anxiety and worse quality of life (QOL).

An individual's overall well-being encompassing various domains that may differ across scales, QOL typically includes both physical and mental health components.

 People with MS self-report lower levels of QOL compared to the general population.

 Several studies on stigma in people with MS found an inverse association between level of stigma and patient-reported QOL.

 found that, although stigma in general was strongly related to QOL, self-stigma was more strongly associated than enacted stigma. They also found that those who experienced greater selfstigma experienced poorer QOL across all 4 domains (physical health, psychological health, social relationships, and environmental aspects), whereas those who experienced greater enacted stigma only experienced reduced physical health. However, Grothe et al

 found contradictory results: only enacted stigma (and not self-stigma) significantly predicted QOL in people with MS.

There is some evidence to suggest that cognitive dysfunction may be associated with stigma. Cognitive impairment occurs frequently in people with MS and includes deficits in speed of processing, memory, and executive function.

 studied people with PPMS and found that higher levels of stigma at baseline were associated with worse performance on 2 measures of processing speed. They also found that higher stigma at baseline predicted worse cognitive function at 1 year, and worse cognitive function at baseline predicted greater stigma at 1 year, suggesting a reciprocal relationship between cognitive function and stigma. Even in the absence of objective cognitive dysfunction, subjective cognitive concerns may be associated with stigma in people with MS.

 Recent studies suggest that although subjective and objective measures of cognitive function are not highly correlated, subjective cognitive impairment may be more strongly associated with psychological factors, such as depression, anxiety, and QOL, than objective cognitive dysfunction.

 Although we did not find any published studies specifically focused on subjective cognitive function and stigma in people with MS, it is possible that self-perceived cognitive deficits and stigma are also related.

Stigma also appears to have important associations with physical health behaviors in people with MS. Reduced adherence to medication regimens has been associated with greater perceived discrimination

 Greater felt stigma has also been associated with lower self-management efficacy.

Robyn M. Lucas, PhD

Articles

Latest Updated Articles