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Multiple Sclerosis in the Middle East and North Africa: Perspectives and Challenges

 feature research on multidisciplinary approaches to managing multiple sclerosis, ranging from the challenges of aging to emerging therapeutic technologies.

Comorbidity, Polypharmacy, and Aging in Multiple Sclerosis

Ruth Ann Marrie, Jacquelyn Bainbridge, Patty Bobryk, Jeff Wilken, Jennifer S. Graves, Renee Stewart, Rachael Stacom, Mona D. Bostick, Maureen T. Choman, Frederick W. Foley, John R. Corboy, Scott D. Newsome, Le H. Hua, Yinan Zhang, Sarah A. Morrow

This narrative review highlights how the increasing prevalence of comorbidities and polypharmacy in aging MS populations impacts disability progression, treatment safety, and overall quality of life. The development of multidisciplinary care models that integrate pharmacists and geriatric principles may help to better manage these complex medical profiles and improve patient adherence.

Exploring Factors and Nonpharmacological Interventions Associated With Respiratory Function in People with Multiple Sclerosis: A Scoping Review

Amani M. Assiry, Ali A. Alammari, Ashley Parish, Brooks C. Wingo

This scoping review identifies that while lung function often remains stable in MS, factors such as disease progression, fatigue, and thoracic kyphosis are associated with respiratory decline. The research emphasizes that nonpharmacological interventions, including respiratory muscle training and Pilates, show promise in improving respiratory outcomes though larger and longer trials are needed.

Lived Experiences of Bladder and Bowel Dysfunction for People With Multiple Sclerosis and Their Providers: A Qualitative Meta-Synthesis

Lauren Van Valkenburgh, Sarah Poinski-McCoy, Valerie J. Block, Heather Coats, Mark M. Mañago

Qualitative analysis from the UK reveals that people with MS face social and emotional distress due to bladder and bowel symptoms. The barr yet they often encounter barriers to care such as their own embarrassment and a lack of clinician-initiated discussions. The findings suggest a need for more educational resources and better access to interventions. 

The recurring gap identified in 3 of these papers is not knowledge of MS itself but coordination: who on the care team owns comorbidity review, respiratory monitoring, and bladder and bowel conversations.

The Emerging Role of Optogenetics in Multiple Sclerosis Research

Hala AbouShawareb, Boshra Attiya, Asmaa Zakria Alnajjar, Mostafa Meshref, Ahmed Z. Obeidat

This review explores the potential of optogenetics, a technique combining light and genetics, to promote remyelination by stimulating oligodendrocyte and Schwann cell proliferation in MS models. While currently focused on animal and cell studies, this technology offers a possible future for targeted drug delivery, gene therapy, and the repair of cognitive deficits associated with neurodegeneration, though human safety has yet to be determined. 

The distance between an optogenetics model and an MS clinic is still considerable, but work like this is where the next generation of repair-focused therapies will begin.

This month’s issue of IJMSC features research on multidisciplinary approaches to managing multiple sclerosis, ranging from the challenges of aging to futuristic therapeutic technologies.

IJMSC June 2026 Research Roundup

 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, the Accreditation Council for Pharmacy Education, and the American Nurses Credentialing Center, 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 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 (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 Approved Continuing Education 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. 

, CMSC continuing education director, 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.

From the Brigham MS Center, Brigham and Women’s Hospital, Boston, MA (SIW-K, BCH, SBK, JDZ, TS, BIG); Department of Neurology, Harvard Medical School, Boston, MA (BCH, JDZ, TS, BIG); Biostatistics Center, Massachusetts General Hospital, Boston, MA (BCH). 

 Bonnie I. Glanz, PhD, 60 Fenwood Road, Boston, MA 02115; 

 Sasha I. Winston-Khan, BS, has disclosed a financial relationship with Adelphi Values (employee). All other authors report no relevant disclosures.

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 

 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.

 Delaying needed physician visits has been associated with greater perceived discrimination

 Greater stigma is also associated with negative health behaviors and a lack of psychological resources or reserve,

 all of which can detrimentally impact QOL.

In terms of pharmacoeconomics, higher levels of perceived,

 internalized, enacted, and overall stigma

 have been associated with poor economic situations. Unemployment and disabled work status have been associated with greater felt stigma,

 Greater perceptions of stigma have also been associated with work difficulties.

 Additionally, the need for and lack of a caregiver were associated with internalized stigma

While recent quantitative studies add to our understanding of stigma in people with MS, interpretation of the findings remains difficult due to the heterogeneity of measurement tools or scales.

 Some of these instruments may be adequate measures of general stigma in people with MS, but many exclude stigma types, or, if they do include types, do not distinctly measure internalized, experienced (enacted), and anticipated stigma. These measures are summarized below.

Stigma Scales for Chronic Illness (SSCI) 

There are 2 versions of the SSCI, the SSCI-24 and its shortened version, the SSCI-8.

 To create and refine the preliminary instrument, Rao et al

 organized focus groups, reviewed relevant literature, and conducted cognitive interviews before sending items for psychometric testing to individuals with a variety of neurologic conditions including amyotrophic lateral sclerosis, epilepsy, MS, Parkinson disease, and stroke. The final instrument consisted of a 24-item scale that measures stigma either as a total score or as 2 stigma subscale scores (11 enacted and 13 internalized stigma items).

 created a shortened version by analyzing the original instrument's items and keeping only what they deemed the most informative ones. This scale consisted of 8 questions that, like the SSCI-24, provide a total score (stigma score) and 2 subscale scores (6 enacted and 2 internalized stigma items).

 is defined as acts of discrimination or exclusion one may experience from others; 

 is the shame surrounding one's stigmatized identity and the fears of facing discrimination in the future (similar to Scambler and Hopkins’

 found that the SSCI-24 optimally measured stigma at moderate-to-severe levels and was less useful for detection of stigma at lower levels. Similarly, Molina et al

 found that the SSCI-8 may have a floor effect, an inability to detect slight variations on the lower end of the spectrum/scale. These findings indicate that the SSCIs may not be an ideal fit for measuring stigma in MS considering that stigma in people with MS tends to be highly prevalent but low in severity.

 developed a stigma measure for MS by combining 40 items from 7 preexisting stigma scales, including the SSCI-24 and Earnshaw and Quinn's

 instrument. After a principal components analysis, 4 poor-performing items were dropped. The final scale measured anticipated (20 items), isolation (12 items), and internalized (4 items) stigma.

 A shortened 9-item version of the scale omits the internalized stigma subscale and includes 5 items assessing isolation stigma and 4 items assessing anticipated stigma.

Although this instrument measures 3 types of stigma, 2 of them do not match the internalized, anticipated, and experienced stigma types that Earnshaw and Quinn

 described. Internalized stigma assesses negative feelings toward one's own disease, aligning with Earnshaw and Quinn's

 Anticipated stigma assesses the sense that an individual 

 and so addresses both enacted stigma (experiences of stigmatization) and anticipated stigma (fears of facing stigmatization in the future). Isolation stigma, on the other hand, assesses a person's sense of exclusion and ostracism because of their disease, a concept that the other stigma scales often include but do not identify as a separate stigma type.

Two studies have adapted the 9-item HIV-related RSS for use with people with MS.

 referred to the new instrument as the MS-Related Stigma scale; Eldridge-Smith et al

 named it the RSS-MS. Although the original RSS claimed to measure only perceived stigma, 35 studies have shown that the MS-versions of the instrument appear to include internalized stigma concepts as well. For the RSS-MS, a team of psychologists and MS clinicians concluded that the instrument's content was representative of an internalized stigma construct: the devaluing of one's own worth and/or feeling ashamed/ responsible for one's illness.

 found that the themes between the MS-Related Stigma scale and an earlier qualitative study on stigma in MS were comparable, indicating that their instrument measured both perceived and internalized stigma. Valvano et al

 described internalized stigma as the directing of others’ negative attitudes or beliefs about people with a stigmatized identity against oneself. Interestingly, although both studies provide explicit definitions for internalized stigma, neither clearly defines perceived stigma.

Originally used to assess people with mental illnesses,

 the 28-item ISS measures stigma across 3 dimensions: disclosure (10 items), potential positive aspects of mental illness (5 items), and discrimination (13 items).

 Although the 3 subscales combine to form the ISS, King et al

 suggested that the discrimination subscale could be a full stigma scale on its own. To adapt the discrimination dimension of the ISS to assess stigma in people with MS, Ochoa-Morales et al

 altered some wording to reference general health conditions instead of mental health conditions and instructed people with MS to respond according to their experience with MS. The discrimination subscale focuses on respondents’ perceptions of negative reactions, hostility, or discrimination from others,

 which suggests that it is measuring enacted/experienced stigma.

Quality of Life in Neurological Disorders (Neuro-QOL)

The Neuro-QOL scale, a measure of health-related QOL for adults with neurologic disorders, is based on the SSCI-24 or the SSCI-8, depending on administration. The Neuro-QOL computer adaptive testing version uses an item bank made up of the SSCI-24 items. The Neuro-QOL static short form questions are the same ones used in the SSCI-8.

 Both versions have been used for people with MS.

 The Neuro-QOL user manual defines stigma as the experience of negativity, prejudice, and discrimination from the self or others because of one's disease-related differences.

 Although the SSCIs identify 2 types of stigma, enacted and internalized, neither form of the Neuro-QOL distinguishes among the different stigma types.

 consisting of 4 statements answered using a 5-point Likert scale with 1 being never, 2 being rarely, 3 being sometimes, 4 being often, and 5 being always: 1) “because of my MS, some people seemed uncomfortable with me”; 2) “because of my MS, some people avoided me”; 3) “because of my MS; I felt left out of things”; and 4) “I felt embarrassed about my MS.” These questions appear to address both experienced and internalized stigma.

 developed a 20-item measure of perceived stigma in people with MS after reviewing the development of the SSCIs as well as 2 qualitative studies.

 The items relate to concealment, social restrictions, other people overemphasizing the disease, isolating oneself from relationships with others who have the disease, and psychosocial aspects of stigma. However, it is not made clear how perceived stigma directly relates to internalized, anticipated, and experienced stigma. Because Kalantari et al

 on the development of the SSCIs to aid in the creation of their own instrument, the items likely relate to felt (internalized and anticipated) and enacted stigma, the 2 subscales included in the SSCIs. Additionally, 1 of the qualitative studies that Kalantari et al

 reviewed is the same study that Valvano et al

 compared their MS-RS scale to when determining that their scale measured perceived and internalized stigma.

 Therefore, this scale may contain elements of internalized, anticipated, and experienced stigma, but does not distinguish between these stigma types, and only explicitly measures perceived stigma.

We have reviewed a growing body of research on stigma in people with MS that indicates that stigma is common and is associated with decreased QOL, greater depression and anxiety, and worse physical health behaviors. Most studies show that how people with MS experience stigma is affected by disease variables; those with greater disability, more visible symptoms, progressive disease, longer disease duration, earlier age of onset, and older age tend to experience greater levels of stigma. However, 1 study found that, after adjusting for disability, age, and other covariates, people with MS who have had a longer disease duration appear to experience less stigma, which may result from additional time to come to terms with or adapt to an MS diagnosis and its associated social label.

 All findings demonstrate the importance of assessing stigma in people with MS and suggest that interventions aimed at reducing it have the potential to impact well-being.

 They also suggest that intervention strategies may want to target individuals with MS who are most vulnerable to stigma, such as those with increased disability, progressive disease course, and more visible symptoms.

Many instruments have increased our general understanding of stigma in people with MS. These scales, however, have done little to explore differential stigma patterns by type (anticipated, experienced, internalized). Studies that do use instruments that define stigma types often only examine outcomes using the total stigma score, foregoing any analysis of stigma types.

 Even in cases where instruments and investigators do include stigma types, the types of stigma being measured and their definitions vary widely. For instance, only 1 of the instruments used to measure stigma in people with MS described in this review includes 3 stigma types (isolated, anticipated, internalized),

 but the internalized stigma definition is the only one that aligns with the Earnshaw and Quinn

 describe anticipated stigma as fear or expectations of future stigma 

 experiences with stigma while Earnshaw and Quinn

 define anticipated stigma as the fear or expectation of future stigma and they put experiences of stigma into a separate type (appropriately named experienced stigma). The SSCIs, which measure internalized and enacted stigma, define internalized stigma as both the fear of future discrimination and the sense of shame around one's identity, a different definition than in prior studies.

 These are concepts that Earnshaw and Quinn

 separate into anticipated and internalized stigma. Clearly, stigma-type terminology often represents different constructs depending on the instrument. This makes generalizing and interpreting findings related to stigma types in people with MS extremely difficult. In this review, we have attempted to integrate the various terminologies to provide a coherent description of the available research.

Instruments that do not distinguish stigma types may miss out on important findings that could help clarify specific relationships among stigma types and health-related outcomes. For example, the study using the SSCI-24, which found that internalized stigma had a stronger relationship with QOL than enacted stigma, cannot determine whether Earnshaw and Quinn's

There are numerous instruments used to measure stigma in people with MS, creating ambiguity about different stigma types and their definitions and complicating the ability to generalize study findings.

Joelle Massouh, MSCN

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