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Understanding Diverse Caregiver Experiences and Their Impact on Caregiver Burden in Multiple Sclerosis

Background: Multiple sclerosis (MS) is a neurological condition leading to significant disability and challenges to quality of life. To slow progression and reduce relapses, it is critical to rapidly initiate disease-modifying therapy (DMT) after diagnosis. Patient demographics may play a role in timely DMT initiation. Financial barriers may also result in delays in DMT access.

Methods: This retrospective, single-center, cross-sectional study included patients seen at a neurology clinic at a large academic medical center for an initial evaluation of MS between January 1, 2022, and June 30, 2022. As an indicator of the quality of care, the primary study outcome was whether patients were offered DMT initiation on their first clinic visit. Secondary outcomes evaluated the time to DMT initiation, including differences in care based on demographic factors and financial coverage.

Results: Of the 49 eligible individuals studied, 45 (91.8%) were offered DMT at their initial MS visit. Descriptive statistics appeared to demonstrate that demographic factors did not impact whether DMT was offered. However, the majority of patients experienced access barriers relating to prior authorization requirements (80.0%) and/or the need for co-pay assistance (52.0%).

Conclusions: DMT was appropriately offered to a majority of patients at their initial MS visit, regardless of demographic considerations. No offer of DMT and delays in initiation were primarily due to the need for imaging and specialty referrals, as well as financial barriers. Medication assistance teams may play a crucial role in limiting delays and financial hurdles associated with insurance coverage and co-pay assistance.

 We would like to thank Jorge L. Almodóvar-Suárez, MD, for his expert opinion in the formulation of this project’s purpose and design.

 None of the authors or contributing members report any conflicts of interest.

 No funding was obtained in order to conduct this study.

 Components of this study were discussed during a platform presentation at University of North Carolina Eshelman School of Pharmacy’s Research in Education and Practice Symposium; May 18, 2023; Chapel Hill, NC.

Multiple sclerosis (MS) is a disabling, immune-mediated, demyelinating disease of the central nervous system that affects more than 400,000 people in the United States and 2.3 million people worldwide.

 It can lead to irreversible disability and complications, including visual or sensory disturbances, weakness, fatigue, tremor, spasticity, difficulties with ambulation, loss of bladder or bowel control, cognitive impairment, and depression.

 Patients with MS often encounter barriers associated with complexity of care and cost, as well as challenges to quality of life, throughout the course of their disease management.

Quality measures specific to MS have been identified to assess delivery of care, gaps in MS management, and overall patient outcomes. Because DMT initiation and monitoring have been associated with improvement in MS quality of life and because DMT treatment is the mainstay to reduce relapses and new MRI activity, a DMT should be promptly initiated following diagnosis.

 The Multiple Sclerosis Coalition further emphasized this point, stating that DMT should be started as soon as possible after diagnosis, regardless of the patient’s age.

According to 2020 American Academy of Neurology guidelines, people with a new diagnosis of MS should be counseled on specific DMT options at a dedicated treatment visit. These options include several injectable, oral, and intravenous medications with varying adverse effects, cost profiles, safety concerns, efficacy, and tolerability. The choice of an appropriate DMT is complicated and multifaceted. Clinicians should evaluate readiness or reluctance to initiate DMT, barriers to DMT adherence, and other patient-specific factors prior to initiation.

Given the importance of minimizing delays in DMT initiation, the MS Brain Health organization has released strategies for primary and specialty care physicians to ensure timely referrals and prescribing. This includes awareness of MS symptoms; rapid diagnosis; education for patients, family members or caregivers, and physicians regarding early referral to a neurologist; and improved access to MS specialists. They also recommend using updated diagnostic criteria and aligning this with prescribing guidelines, with the goal of starting treatment promptly after diagnosis. Evidence shows that starting treatment early is associated with improved long-term outcomes.

 The Big Multiple Sclerosis Data (BMSD) Network conducted a multinational study, including more than 11,000 patients from the Danish, Swedish, Italian, and French national registries, which demonstrated improvements in outcomes among patients who began treatment within 1.2 years of disease onset.

Health disparities have previously been shown to play a role in DMT initiation, disease burden, and mortality. In a retrospective chart review of the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) between December 2016 and May 2020, Hispanic patients (43%) were less likely to receive DMT compared with non-Hispanic patients (62%) and Black patients were least likely to receive treatment with DMT (26%).

 This is especially relevant because studies have shown that outcome discrepancies, including rapid progression and disability, disproportionally affect Hispanic and Black patients compared with White patients. The causes of these discrepancies have only been hypothesized, but genetics, environment, insurance status, and cultural considerations may contribute.

 Additionally, a retrospective analysis conducted by Geiger et al utilized United States Optum Market Clarity data to analyze trends among 682 patients with a new diagnosis of MS. Researchers found that non-Hispanic White patients were more likely to receive high-efficacy DMTs compared with Hispanic and Black patients, despite members of the latter groups being at higher risk for poor outcomes.

Although guidelines for DMT initiation and monitoring have been developed to ensure quality care, there are limited data regarding the effect of race, ethnicity, age, and other patient demographics on MS DMT initiation and continuation, as well as limited data on the implementation and outcomes of initiation and adherence practices.

 Given the paucity of evaluative data, our study assessed DMT initiation at the University of North Carolina (UNC) Hospitals Neurology Clinic during new patient visits, specifically to examine whether patients were offered DMT. Patient demographics, including type of MS, race, ethnicity, age, sex, sexual orientation, insurance type, and access (or lack thereof) to DMT, were included as part of the assessment.

There are also limited data on the impact of financial barriers on DMT delays. Many insurance companies require step therapy or specific trials of DMT that may differ from physician and patient preference. These requirements can result in the trial of ineffective therapies or patient nonadherence due to intolerable adverse effects, leading to disease progression and permanent loss of function. A 2018 survey of 507 patients with MS showed an average delay of 8.3 weeks from the time of prescription to when patients received the first dose of the originally prescribed DMT.

 Past issues with DMT access were reported by 48.7% of participants, and 11.7% were experiencing a DMT access issue at the time of the survey. Of those participants reporting an access problem, 29.8% with a past issue and 48.9% with a current issue had a self-reported relapse during the delays. The most common reasons for current and past DMT access issues were insurance companies requiring authorization documentation (21.4% vs 42.9%, respectively) and high co-pay costs (31.0% vs 29.7%, respectively).

With the development of new DMTs, the financial burden for patients with and without insurance has also increased.

 Financial burden associated with MS has also been shown to lead to financial toxicity, which includes both high monetary costs (eg, medical bills, medication costs) and higher rates of emotional distress and negative coping mechanisms, such as nonadherence and lifestyle alterations.

 The UNC Medication Assistance Program (MAP) team assists patients with navigating payer-associated drug access requirements and works to minimize the financial toxicity associated with high-cost medications to prevent delays in treatment.

 Many high-cost medications require prior authorization (PA). The MAP team submits PA requests for specialty medications and navigates denial appeals as needed. A follow-up on each request is conducted every 3 days to ensure timely completion. The team may also obtain co-pay cards or refer eligible patients to co-pay assistance programs. Hopefully, MAP resources improve access to and reduce delays in DMT treatment for patients with MS.The objective of this study is to identify potential barriers to the prescribing and timely initiation of DMT for patients with MS at our clinic. Baseline characteristics, such as demographics, socioeconomic status, and insurance status, may play a role in disparities among this patient population.

This single-center, retrospective, cross-sectional study evaluated patients with MS who came to the UNC Hospitals Neurology Clinic for an initial evaluation between January 1, 2022, and June 30, 2022. The study was approved by the institutional review board at the University of North Carolina Medical Center. Patients were identified through chart review of electronic health records; demographics, medication history, and insurance coverage information were collected from the same. This study included all patients with a diagnosis of MS as defined by AAN guidelines and with an associated 

International Statistical Classification of Diseases, Tenth Revision,

, this excluded patients younger than 18 years and older than 65 years. Patients older than 65 years were excluded due to the lack of evidence regarding changes in outcomes with DMT initiation. Additional exclusion criteria included patients who were pregnant or planning to become pregnant, who were incarcerated, who did not attend the initial visit, or who were only seeking a second opinion from the clinic. Patients with rheumatologic conditions or neuromyelitis optica were also excluded due to these conditions mimicking MS and concerns relating to additional immunosuppressants influencing the decision to start DMT. Patients with radiologically isolated syndrome also were excluded due to variations in treatment that would not be consistent with our intended study population.

The primary outcome of this study was to determine whether DMT initiation was offered during the first patient visit to the neurology clinic. Each visit consisted of a 1-on-1 appointment between the patient and the neurologist. The standard for quality care was met if documentation explicitly stated that the patient was prescribed DMT during the visit and/or specific DMT agents were discussed. The quality metric was not met if a conversation regarding medications was broadly initiated but no specific DMT options were discussed. A secondary outcome was the time to DMT initiation, defined as the time from the date of the initial visit to the date the DMT prescription was written. Differences in DMT choices and potential health inequities within the MS population were evaluated by compiling information on the patient’s age, race, ethnicity, sex, sexual orientation, type of insurance, type of MS, need for insurance PA or appeal, and co-pay assistance. The cohort was divided into 2 subgroups: those who were offered a new DMT and those who continued on a previous DMT started by an outside physician. Patients who continued their previous therapy had a date to first prescription of 0 days. Due to a small sample size and to allow for lack of specificity in the initial hypothesis, descriptive statistics were utilized to determine potential relationships between variables.

Of the 78 patients with an initial MS visit at the neurology clinic during the study period, 49 patients were eligible for study analysis. A majority of study participants were White (57.1%) and female (79.6%), with a mean age of 41.8 years old (

). The most common type of MS was relapsingremitting (89.8%), although other forms of MS were present, including primary progressive (4.1%) and secondary progressive (6.1%). The majority of patients had commercial insurance (81.6%); 2.0% were enrolled in Medicare, 12.2% in Medicaid, and 4.1% were self-pay. Given that all patients were younger than 65 years of age, only a small proportion of patients were eligible for Medicare. Of note, 17 patients (34.7%) had previously been on DMT prior to their initial appointment at the neurology clinic, and they continued on their previous regimen.

, of the 49 patients analyzed, 45 (91.8%) were offered DMT at their initial MS visit in accordance with best practice guidelines and patient-specific criteria. This cohort included 17 patients who were previously on DMT and continued their previous regimen. Two patients were lost to follow-up prior to DMT initiation, and 1 patient refused DMT. In total, only 4 patients (8.2%) were not offered DMT at their initial visit. The most prescribed DMT was ocrelizumab (Ocrevus; 24.5%), followed by diroximel fumarate (Vumerity; 14.3%) and teriflunomide (Aubagio; 12.2%).

The individuals offered DMT were further analyzed to assess the time from their first visit to their first DMT prescription. Upon exclusion of patients who refused treatment or were lost to follow-up, there were 42 unique patients. Of these, 25 were offered a new DMT. Patients starting a new DMT frequently require baseline imaging and lab work, which delays the time to first prescription. There was a large variation in time to prescription in our study (range, 0-232 days). The subgroup of patients offered a new DMT had an average time to prescription of 55.84 days. For the combined group of those who continued on a previous DMT and those who started on a new DMT, the average time to first prescription was 33.24 days (

In addition to analyzing the time to first DMT prescription, factors relating to time to initiation of therapy were also assessed, such as PAs. Of those patients with commercial insurance, 80% required a PA, whereas 100% of patients with Medicare required a PA. The only patient with Medicaid included in the analysis was not offered DMT, so no information regarding PA was obtained.

Time from initial PA submission to final coverage decision was also analyzed for patients receiving a new DMT. Of the 25 patients who initiated new DMT regimens, 19 were required to submit a PA; 2 patients were self-pay and 4 patients did not require a PA. Of the 19 patients with PA, 9 (47.4%) were initially denied and required an appeal letter. Upon submitting additional appeal documentation, 1 patient (11.1%) was approved, and 8 patients (88.9%) were again denied. The average and median length of time to final coverage decision was 12 days and 7 days, respectively. The range of 0 to 102 days was due to an outlier, which required 103 days to final decision. Given the significant degree of variation, a second analysis was conducted with the outlier excluded. With this data point removed, the average length of time to final decision was 7 days, with no change to the median. After removing the outlier, the next greatest length of time to final decision was 22 days. Among those patients who required a PA, 52.0% also required co-pay assistance, regardless of the final PA decision. Of the 13 patients who utilized co-pay assistance, 3 patients (23.1%) used a co-pay card, and 10 patients (76.9%) were enrolled in manufacturer assistance (

Further analysis was conducted for the 4 patients who were not offered DMT to determine what factors may have played a role (

). All 4 were women and had relapsing-remitting MS. Sexual orientation was specified for only 1 patient, who identified as heterosexual. One patient was Black; 3 patients were White. Although all patients were actively insured, 3 patients had commercial insurance and 1 patient had Medicaid. A chart review for all 4 identified that pending MRI results appeared to be the reason treatment options were not discussed. Additionally, 2 patients required referrals to neuroimmunology specialists for further treatment discussions.

This study contributes to the literature discussing the importance of early assessment and initiation of DMT in patients with new diagnoses of MS or who have switched care providers. Although it was encouraging to see the high proportion of patients offered DMT at our clinic, it is essential to acknowledge the reasons for a lack of DMT initiation. The primary reason for delayed DMT appeared to be the need for baseline imaging and laboratory work. An additional cause of delay in initiation was a referral to neuroimmunology for patients with especially complex histories. However, even when these challenges arise, DMT selection discussions should occur as close to diagnosis as possible so time to first prescription after imaging is minimal.

Multivariate analysis of the primary outcome was unable to be conducted because of the small sample size and lack of specificity in the initial hypothesis, so statistical significance could not be determined. However, contrary to national data, type of MS, race, ethnicity, age, sex, sexual orientation, and insurance type did not appear to impact the decision to initiate DMT at the initial neurology clinic encounter. All 4 patients not offered DMT at their initial visit were women, but this was not unexpected due to MS disproportionately affecting women compared with men. Although there does not currently appear to be a concern relating to the role of demographics and baseline characteristics in standards of care for patients with MS, it is still important to consistently assess these components due to the role they have been found to play nationally. This conversation is especially crucial in academic medical centers because of the high volume of trainees caring for patients. Much like appropriate initiation of DMT, it is important that learners are trained on biases to minimize risk for their patients.

Globally, concerns relating to the availability of medical equipment for diagnostic tests and lack of health care professionals with the knowledge to make the diagnosis have also been shown to impact delays in MS diagnosis and treatment.

 Another global barrier is lack of timely availability among health care professionals with the ability to diagnose MS, which was similarly demonstrated in this study among more complex patients who required referral to specialists.

 However, the largest global barrier to rapid diagnosis and subsequent time to initiation of DMT is believed to be lack of awareness of MS symptoms among the general public and health care professionals.

Our study also found that the requirements for baseline imaging and specialist referral played important roles in DMT initiation delays. Access and payment concerns resulted in additional delays to DMT start. Nearly all patients with a new DMT prescription required a PA, regardless of insurance type. It is especially important to note a PA was required for all Medicare patients. In addition, although most patients included in this study eventually received insurance approval, there were frequent rejections after initial appeals, resulting in further delays.

When evaluating the combined average length of time to first prescription and PA approval, it took approximately 9 weeks for most patients to gain access to DMT after their initial visit. Additionally, it is important to note that although the average time to PA decision was approximately 1 week, this statistic is likely skewed based on the resources available at the study institution. The MAP team plays a large role in facilitating conversations among insurance companies, providers, and patients to expedite the PA process. At institutions without these resources, there are likely greater challenges to access and time to treatment initiation. This is demonstrated in the Geiger et al and Margolis et al studies, in which patients had a mean time from diagnosis to initiation of DMT of 4.9 and 5.3 months, respectively.

 Although these are all within the 1.2-year time frame identified by the international BMSD Network study as a marker of decreased risk for disability, researchers in each study looked at time of diagnosis rather than disease onset, as did the BMSD network.

 Nonetheless, each reinforces the importance of minimizing delays in DMT initiation.

In addition, the MAP team also assists with financial barriers by facilitating co-pay assistance. With approximately one-fourth of patients requiring co-pay assistance, financial toxicity is another concern associated with DMT. It is likely there is a greater concern for this at other institutions without MAP resources, as patients are frequently unaware of financial assistance options. Assistance programs can be complex and difficult to navigate, which is concerning because of the impact of financial toxicity on access to appropriate treatment. Supporting medication assistance teams in as many health systems as possible will allow patients the best possible access to specialty medications such as DMT.

This study had several limitations that may have impacted the results. This was an observational study, rather than a controlled design, so confounding factors were not able to be fully accounted for. Multivariate analysis was unable to be conducted due to the small sample size and lack of specificity in the initial hypothesis and classification of demographics. Therefore, statistical comparison could not be determined, and only descriptive statistics could be utilized. Of note, a portion of the cohort included patients with progressive MS, which swayed the mean baseline age and suitable DMT options. Also, given that being older than 65 years was a component of this study’s exclusion criteria, the low number sampled in these data underestimates the true proportion of patients with Medicare seen and exposes a patient population with increased concerns relating to access and delays in care. It is likewise important to acknowledge additional institution-specific factors may have played a role in further delays in DMT initiation. For instance, baseline labs are required prior to DMT initiation and phlebotomy is not available at the UNC neurology clinic. Therefore, patients must rely on external lab draws and results must be faxed to the clinic. Although the impact of this was not captured as part of this study, it has been noted as a source of delays in DMT initiation times at the clinic in the past.

Further investigations regarding appropriate, timely, and cost-effective DMT initiation should be conducted at additional institutions to evaluate discrepancies and ensure equitable access to high-quality care for all patients. Social determinants of health are also an important aspect to continue to investigate when evaluating DMT decisions because they can be a large barrier to equitable health care. Finally, financial considerations contribute to delays in access to DMT, so financial assistance resources may play a pivotal role in improving access and decreasing financial toxicity.

Evaluation of a Quality Measure for Multiple Sclerosis Care: Disease-Modifying Therapy Initiation at the University of North Carolina’s Outpatient Neurology Clinic

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.

Annette Okai, MD, FAAN

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