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Experiences of Word-Finding Difficulties in Multiple Sclerosis: A Qualitative Interview Study

The perception that one is at increased risk of interpersonal victimization or violence can deleteriously affect community participation and quality of life. Race, sex, and disability status, often associated with use of an assistive mobility device (AD), are known correlates of perceived risk of victimization; however, almost no research has explored how these variables intersect for individuals with multiple sclerosis (MS), and none have sought to identify potential risk and protective factors.

Data for the present study come from a single time point derived from a 10-year longitudinal survey of 446 individuals with MS. Lifetime trauma exposure, personal resilience and self-efficacy, control over participation, and perceived risk of interpersonal victimization due to disability were all assessed via self-report. Statistical analyses included analysis of covariance with participants stratified by race/ethnicity, sex, and AD use.

After controlling for lifetime trauma exposure and severity of physical impairment, the use of an AD was significantly associated with greater perceived risk of victimization due to disability. Further, people with MS from racial and ethnic minority groups who used ADs had the highest perceived risk relative to all other groups. Higher levels of perceived risk were associated with a lower sense of control over community participation, lower resilience, and lower disease management self-efficacy.

Visible indicators of disability may contribute to perceptions of vulnerability, especially among people with MS who are racially and ethnically marginalized. Clinicians should be aware of how perceived vulnerability may impact a sense of control over community participation, particularly when educating patients on AD use.

From the Department of Social Work, Louisiana State University, Baton Rouge, LA (LAM); and the Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA (DR, AF, IM). 

 Leah A. Munroe, MSW, Huey P. Long Field House, APT 311, Baton Rouge, LA 80802; 

 The contents of this publication were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR; grant number H133B080024). NIDILRR is a center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this publication do not necessarily represent the policy of NIDILRR, ACL, or HHS, and no endorsement by the federal government should be assumed.

 The authors report no conflicts of interest.

Living with a cognitive or physical disability can affect a person's sense of personal safety, contributing to an increased fear of interpersonal victimization (eg, physical/sexual assault, theft, etc).

 Increased perception of crime can follow in the wake of personal victimization, witnessing a crime, or even hearing about a crime in the community.

 Fear of victimization may also be related to age and sex, with some previous research suggesting that women, older adults, and young adults fear interpersonal victimization at higher rates than men and middle-aged adults.

 While men are generally more likely to be the target of crimes than women, women with disability are more likely to be targeted than men with disability.

 Fear of victimization can lead to restrictions in community participation, as individuals may (for example) avoid strangers, restrict social activities, or avoid activities at night. These behaviors can lead to social isolation and poorer quality of life.

In addition to personal demographic factors, visual indicators of disability, such as the use of an assistive mobility device (AD), may also contribute to a sense of vulnerability. One qualitative study of people with disabilities in Ireland noted that using an AD can be a double-edged sword,

 such that while utilization of ADs can increase one's feelings of safety in some situations, in other instances, ADs may draw attention to one's disability and may make them a target for interpersonal crime.

The current literature on disability and perceived risk of victimization has several conceptual and methodological problems. First, most studies do not differentiate between a 

 perception of increased risk due to one's disability. Second, some research suggests that being a woman or belonging to a racial or ethnic minority group influences a person's fear of victimization,

 but very few studies take an intersectional approach, examining how gender and race interact to influence perceived risk of victimization.

 Third, few studies have examined perceived risk of victimization in a sample of adults with a chronic and progressive health condition, such as multiple sclerosis (MS). Finally, research has yet to investigate risk or protective factors linked to perceived risk, nor has it adequately addressed potential confounding variables, such as lifetime trauma exposure, when examining perceptions of vulnerability.

These factors are paramount in MS, where a progressive loss of neurologic function and increased use of ADs is common. This analysis examines fear of interpersonal victimization due to disability among a large sample of adults with MS. We examine how race, age, sex, and use of a visible AD for mobility relate to fear of interpersonal victimization. We identify potential protective factors and examine how perceived vulnerability is related to community participation outcomes.

This study used data from a national, longitudinal survey funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. This survey tracked mental and physical health in 1855 individuals with spinal cord injury, MS, muscular dystrophy, or postpolio syndrome and included 7 assessment time points from 2010 to 2018. Final surveys were completed and returned by 446 participants with MS (91.6% of 487 originally sent). Data for the present analysis were limited to this final time point, where measures relevant to trauma and perceived vulnerability were collected. All surveys for this time point were mailed between October 2016 and May 2017.

Participants were recruited from a research participant registry at the University of Washington (UW), advertisements in MS organization newsletters and websites, word of mouth, and the UW MS clinic. Inclusion criteria included self-report of physician-confirmed MS diagnosis, 18 years of age or older, and English language literacy. Participants completed consent documents and returned them with completed surveys. Each returned survey was examined by research staff for completeness; if missing data were identified, staff attempted to contact the participant and obtain the missing data via letters and phone calls. Participants were reimbursed $25 for completing each survey. All study procedures were approved by UW's Human Subjects Division.

Demographic variables, including age, race/ethnicity, years since diagnosis, education and income level, zip code, and sex, were included for descriptive purposes. Due to the relatively small number of respondents belonging to a racial minority, compared to White, this measure was collapsed into binary categories, White and racial minority. Individuals who identified as belonging to the racial or ethnic groups of Black, Asian/Pacific Islander, Hispanic/Chicano, Native American/Alaska Native, or other were categorized as racial minority. We chose the terminology 

 per the Centers for Disease Control and Prevention's recommendations of preferred language.

 Lifetime traumatic exposure was measured using the Life Events Checklist (LEC5) from the 

Diagnostic and Statistical Manual of Mental Disorders

, fifth edition. The LEC5 is a 17-item measure based on the original Life Events Checklist developed by the National Center for PTSD and was initially designed to assist a clinician in diagnosing posttraumatic stress disorder (PTSD).

 The LEC5 asks respondents about lifetime (ie, childhood, adolescent and/or adult) exposure to stressful or traumatic events, including natural disasters, serious transportation accidents, physical and sexual assault, and combat exposure.

 Respondents are asked to indicate 1 of 3 levels of exposure to each event (

). The LEC5 demonstrates convergent validity with other measures that assess trauma exposure and is associated with PTSD severity.

 A total count of personally affecting events (ie, events that 

) is commonly used in PTSD research and demonstrates adequate reliability

No validated measure of perceived risk of victimization due to disability could be identified for this study; therefore, this study created a 3-item scale based on the original wording of 3 LEC5 interpersonal victimization items. Participants were asked, “Because of your disability, how much more at risk do you feel for: (1) Physical assault (for example, being attacked, hit, slapped, kicked or beaten up); (2) being the victim of robbery or theft; and (3) sexual assault (rape, attempted rape, made to perform any type of sexual act through force or threat of harm)?” Responses on a 5-point scale were 

somewhat more risk, quite a bit more risk

. A total score was created by summing these 3 items, such that the total possible score ranged from 3 to 15. Cronbach a for this measure was 0.93, suggesting a strong internal consistency. For clarity, this in-house measure is referred to as the Perceived Risk of Victimization due to Disability (PRoV-D) scale.

Severity of physical disability or impairment was measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function With Mobility Aid (version 1) short form. This 11-item measure assesses the ability to engage in activities of daily living (eg, bathing, eating, and toileting) and physical ability (eg, ability to reach an overhead object, open a heavy door, and stand upright briefly without support). Response choices are on a 5-item scale, ranging from 

. This measure demonstrates strong psychometric properties in samples of people with medical conditions, including MS.

 The total score collected from the PROMIS Physical Function Scale was later normalized to a 

 score based on a large national comparison sample for analysis.

Choice and control over participation was assessed using the 13-item Control Over Participation Subscale, taken from the Enfranchisement Scale.

 The Control Over Participation subscale reflects the extent to which one perceives a degree of control over and choice in participation and contains items such as, “I am able to go out and have fun,” “I have control over how I spend my time,” and “I participate in activities that I choose.” Response choices range across a 5-point scale from 

. Raw scores were transformed to a normalized 

 score for analysis. Psychometric properties, including internal consistency and sensitivity to change in people with disabilities, have been previously described.

Use of an AD for mobility was measured by a single item asking participants, “Do you use any equipment or devices to help you move around?” If answered in the affirmative, participants were asked to name the specific AD and frequency of use. This question was dichotomized as yes/no for the present analysis.

Disease-management self-efficacy was measured using the University of Washington Self-Efficacy Scale. This 6-item scale asks participants to describe their confidence in managing their health condition. Two of the items are “How confident are you that you can keep your health condition or disability from interfering with your ability to interact socially?” and “How confident are you that you can figure out effective solutions to issues that come up related to your health condition or disability?” Items are scored on a 5-point scale ranging from 

 score metric. This scale has demonstrated strong psychometric properties in people with disabilities.

Resilience was measured using a custom short form derived from the 28-item University of Washington Resilience Scale (UW RS).

 This short-form UW RS was developed and validated in people with disabilities, including MS, and conceptualizes resilience as the capacity to bounce back from and/or maintain function in the face of adversity. The UW RS and sample short forms demonstrate strong psychometric properties in both the general population and in people with chronic health conditions. UW RS was derived via a formal process utilizing item response theory, allowing for the creation of custom short forms by selecting different items and different numbers of items from the bank.

 In the present study, participants were offered 10 statements from the item bank with responses scored from 1, not at all, to 5, very much. The statements included, “I maintain a positive outlook even in bad circumstances” and “When something stressful happens, I keep going.” Total scores were transformed to a 

This study had 4 overall aims: (1) describe the overall rates of lifetime trauma exposure and of the perceived risk of victimization due to disability in this sample of people with MS; (2) evaluate the differences in perceptions of perceived risk among subgroups of people with MS, stratifying the sample by race/ethnicity, by use of a visible AD, and by sex; (3) describe the potential protective factors associated with lower perceived risk; (4) characterize the potentially negative impact of perceived risk on control over participation.

We initially hypothesized that women with MS who used visible ADs and who were in a racial or ethnic minority group would report the highest level of risk for being a target of crime due to their disability. We further hypothesized that this heightened perception of risk would be negatively associated with control over participation. Finally, we hypothesized that personal protective factors like resilience and self-efficacy would be associated with less perceived risk of victimization due to disability.

To evaluate these hypotheses, we utilized approaches within the general linear model, including linear regression and analysis of covariance (ANCOVA), adjusting for control variables. Race (White vs racial minority), AD use (yes vs no), and sex (men vs women) were dichotomized for analyses. In all analyses, we controlled for lifetime personal trauma exposure and severity of physical impairment, as these would be expected to influence the perceived risk of the likelihood of victimization.

After removing cases with missing values for the study variables, the final sample consisted of 442 participants. 

 presents the demographic and diagnostic variables of the cohort. Participants were predominantly White (91.9%), and mostly women (82.6%), and had relatively high education levels (58.2% completed college, and 24.7% completed postcollegiate education). Participants ranged in age from 28 to 86 years (M age = 62, SD = 9.8). They reported an average of 22.0 (SD = 9.3) years since being diagnosed with MS. More than 60% of participants used ADs. 

 presents the means and standard deviations for key study variables.

Rates of lifetime exposure to traumatic events are shown in 

. On average, participants reported a personal lifetime history of 1.7 traumatic events (SD = 2.1). They also reported 

 an additional 3.1 (SD = 3.7) events as happening to a close family member or friend. The most frequently reported events that 

 were transportation or car accidents (29.4%) and natural disasters (24.4%). A minority of participants reported a personal history of interpersonal violence marked by either unwanted/uncomfortable sexual experience (14.7%), physical assault (12.2%), sexual assault (10.4%), or assault with a weapon (4.8%).

The mean score on the PRoV-D measure was 5.5 (SD = 3.2) and ranged from 3 to 15. Combining the 3 domains in this measure, 31.4% of participants endorsed that disability made them feel at least 

 for victimization in at least 1 domain. In comparison, nearly half (45.7%) indicated their disability put them 

To evaluate aim 2, we conducted an ANCOVA, controlling for traumatic exposure (in terms of the total number of personally affecting events on the LEC5) and for disability severity (using the PROMIS Physical Function measure). Categorical predictors were sex (male vs female), use of an AD (Y/N), and race (White vs racial minority). The main effect and interaction terms were computed.

The primary outcome (PRoV-D total score) was positively skewed (skewness = 1.0, kurtosis = 1.2), and examination of the quantile-quantile plot for residuals for this outcome also suggested nonnormality. To address this problem, a log

 transformation was utilized, which resulted in more favorable characteristics (skewness = .38, kurtosis =−.30). All further analyses were conducted on this transformed variable.

The overall ANCOVA model was significant (F [1,9] = 14.94, 

 < .001). As expected, both personal trauma exposure (F = 5.0, 

 = .03) and severity of disability (F = 29.2, 

 < .001) were significantly associated with higher PRoV-D scores. A main effect existed for the use of an AD (F = 10.72, 

 > .20) or race (White vs racial minority; 

 > .20). There was a significant interaction between AD use and race (F = 3.8, 

Post hoc analysis revealed that, after controlling for the severity of disability and personal trauma history, people who were from racial or ethnic minority groups and used an AD (n = 32) had the highest ProV-D scores (M = 6.9). The interaction also suggested that, for those who did not use an AD, race did not make a significant difference in perceived vulnerability (

 = .50), whereas among those who did use an AD, belonging to a racial or ethnic minority group was associated with greater perceived vulnerability (

We used linear multiple regression to determine whether positive psychological factors (resilience and self-efficacy) were associated with PRoV-D after controlling for the effects of trauma exposure and disability severity, predicting the PRoV-D outcome while adjusting for covariates. The overall model was significant (F [2436] = 55.5, 

 < .001) and accounted for 20% of the variance in PRoV-D. After controlling for personal trauma exposure and disability severity, a step including self-efficacy and resilience was significant (F change = 13.63, 

 < .001) and contributed an additional 5% of variance to the model. As expected, self-efficacy and resilience were negatively associated with PRoV-D, with similar-sized standardized β coefficients (−0.15 and −0.11, respectively, 

 < .05), suggesting that each separately contributed to the model.

To examine whether PRoV-D was related to participants’ sense of control over community participation, we used a multiple linear regression model controlling for personal trauma exposure and disability severity. PRoV-D total score was used in the final step to predict the Control Over Participation outcome. The overall model was significant (F [2433] = 49.5, 

 < .001) and accounted for 22% of the variance in the Control Over Participation score. After the inclusion of control variables, PRoV-D was negatively associated with Control Over Participation (F change = 22.1, 

 < .001; β = −0.22) and contributed an additional 4% of variance to the model (

This study is unique in its examination of perceptions of the risk of interpersonal victimization due to disability among people with MS. As hypothesized, personal trauma history and severity of physical disability significantly correlated with the perceived risk of victimization due to disability. However, even after controlling for these variables, AD use was significantly associated with greater perceived risk. This result suggests that some people with MS may perceive that the use of a visible AD makes them a target for interpersonal crime. Additionally, participants who identified as a racial or ethnic minority (ie, Black, Asian/Pacific Islander, Hispanic/Chicano, Native American/Alaska Native, or other) and used ADs reported the highest levels of perceived risk. This heightened perception of risk was associated with a lower sense of control over participation, suggesting that a person's sense of personal safety influences how much they feel that they can participate in activities of their choice. These results are consistent with previous research indicating that increased perceived vulnerability to crime reduces individuals’ social engagement and quality of life.

It is important to note that most participants (71%-82%) reported that they felt either at 

 of interpersonal victimization due to their disability. However, 11.4% to 14% described feeling that they were 

 for very serious negative events, including theft, assault, and sexual assault, because of their disability. These individuals tended to have greater levels of physical disability and were more likely to use an AD.

There was no demonstrated effect of participants’ sex on perceived risk, which was inconsistent with previous literature showing that being a woman, particularly a woman who identifies as a racial minority, is associated with an increased perception of vulnerability.

 One explanation for this difference is that our analyses controlled for lifetime trauma exposure, which was associated with perceived risk and is generally higher in women.

 Controlling for this variable may have reduced sex differences in analyses of perceived vulnerability.

When promoting community participation, rehabilitation clinicians may focus on environmental factors (transportation, resources) as well as mobility concerns (eg, ADs, car transfer training). This study emphasizes the importance of also assessing attitudinal factors, such as fear of victimization, when working with individuals with MS. What may present as a lack of adherence to recommendations for AD use may actually represent an unspoken fear for personal safety based on being targeted as disabled, especially for participants from racially and ethnically diverse backgrounds.

The most notable finding is that being from a marginalized group and using an AD was associated with the highest levels of perceived risk of victimization. Historically, MS has been considered a condition primarily experienced by White women.

 Recent research demonstrates more racial/ethnic diversity among adults with MS than previously indicated, with Black women having a higher proportional incidence than other racial groups.

 Under-recognition of MS in Black individuals should be viewed within the context of historical marginalization of this population. This history has contributed to group mistrust and skepticism toward the health care system and physicians. This dynamic can negatively influence patient health outcomes and behaviors, including treatment seeking and adherence to treatment plans.

Strengths of the study include using a large, national sample of individuals with MS, including men and women across the adult lifespan. The relative percentage of participants from a racial minority group was low (around 11%), but the 49 racially diverse individuals who participated were enough to allow for meaningful comparisons, a relative rarity in psychosocial MS research. Study weaknesses include a cross-sectional design, reliance on an in-house measure of perceived vulnerability due to disability, and an overrepresentation of White women (74.1%).

The perceived risk of increased vulnerability to interpersonal violence is an important and understudied factor in MS, and may be related to both participation and use of AD. Future research should continue to increase racial diversity in research, develop validated measures for perceived risk of victimization, address the limitation of dichotomous sex in research, and further evaluate the relationship between MS and lifetime trauma exposure.

Perceived Vulnerability to Disability-Related Victimization in People With Multiple Sclerosis: Community Survey on Risk and Protective Factors

Health care utilization is higher in individuals with multiple sclerosis (MS) than in the general population. However, there are limited data on the reasons for their hospital admissions. Our primary objective is to analyze the reasons for the hospitalization of individuals with MS with the goal of identifying preventable causes.

We conducted a retrospective analysis of a cohort of adults with a confirmed diagnosis of MS admitted to Duke University Hospital between January 2018 and January 2020. This yielded a cohort of 210 individuals. Data were analyzed using descriptive statistics.

The most common reason for admission was urinary tract infection (UTI; 10.3%). The average length of stay was 6.1 days for the individuals with MS vs 5.5 days for the general population. The 30-day readmission rates were 14.9% and 15.5%, respectively. A significant number of admitted patients were not on any disease-modifying therapy (DMT), and no difference in median age was identified between those with a DMT vs those without.

Length of stay and readmission rates were similar to those of the general population in this contemporary cohort. Given the prevalence of bladder dysfunction in MS, it is not surprising that a UTI was the most common reason for admission. Actively addressing management of and techniques for bladder dysfunction may decrease the admission rate for individuals with MS. Though we now have more treatment options for MS, many individuals with the highest health care utilization are not on a DMT. Future research is needed to identify the factors that can be addressed to support these patients and reduce preventable hospitalizations.

From the Department of Neurology, Duke University Hospital, Durham, NC (DP, EL, SS). 

Danelvis Paredes, MD, MPH, 40 Duke Medicine Circle, Suite 4000, Durham, NC 27710; 

 Danelvis Paredes, MD, MPH, disclosed no conflicts of interest. Elijah Lackey, MD, has received honoraria from Doximity and EMD Serono. Suma Shah, MD, has received honoraria from Novartis and Sanofi.

 This manuscript was previously presented as a poster at the Americas Committee for Treatment and Research in Multiple Sclerosis Forum 2023; February 23-25, 2023; San Diego, California.

Multiple sclerosis (MS) is the most common autoimmune disease affecting the central nervous system, with a recent estimate of more than 850,000 people with the disease in the United States.

 The majority of individuals with MS have a relapsing-remitting (RRMS) disease course characterized by inflammatory relapses. Primary progressive (PPMS) and secondary progressive MS (SPMS) are marked by gradual disability accumulation not delineated by discrete relapse and remission. The social and economic burdens of MS span from direct disability-related individual limitations to broad downstream effects, including impacts on relationships and employment.

Prior studies have shown that people with MS are more likely to have chronic comorbid conditions that place them at risk for increased hospitalization rates and higher health care utilization following acute illness.

 In recent years, interest in the interaction between comorbid illnesses and MS has increased as disease-modifying therapies (DMTs) have become better at preventing relapses. However, there are not a lot of current data on acute illness in MS and its impact on disability. Prior evidence from international studies shows that hospitalization of people living with MS contributes independently to disability progression.

Here, we analyze the reasons for hospitalization of individuals with MS with the goal of identifying preventable causes of admission. Targeting preventive measures for the most common causes of admission may provide data to reduce hospitalization rates for people with MS and potentially reduce disability accrual.

An institutional review board exemption (Pro00109722) was obtained to retrospectively review Duke University Hospital electronic health records for adults (≥18 years of age) who were admitted from January 1, 2018, to January 1, 2020, with 

the International Classification of Diseases, Tenth Revision

, code for an MS diagnosis (G35). These records were identified using SlicerDicer.

 A total of 268 records that fit these criteria were obtained. Scheduled admissions were excluded, as well as individuals with no confirmed diagnosis of MS at admission, for a total of 210 records. Two authors (D.P. and E.L.) reviewed the charts and abstracted the data.

Demographic data (eg, age, sex, and race); length of stay; type of MS; extent of disability; admission diagnosis; DMT at time of admission; admitting service; and evaluations by physical therapy, occupational therapy, and speech therapy during admission were obtained, as were 30-day readmission rates and the associated diagnosis. Admission diagnoses were categorized by system (neurologic, cardiovascular, pulmonary, infectious, etc) and subcategorized by particular problems within those systems. A category for neurologic deficits without an identifiable cause was made to capture patients who presented with a neurologic complaint, but for whom further workup did not identify pathology or cause. Pseudorelapses were not included in this category.

Data were analyzed using descriptive statistics. Continuous variables are summarized as median, mean, and standard deviations. Categorical data are presented as percentages.

A total of 210 individuals fulfilled the inclusion criteria. As expected from previous studies, there was a 3:1 female-to-male ratio.

 The average age of our study population was similar to the national average, 54.4 years vs 51.7 years, respectively (

 The average years since diagnosis was 16. Of the cohort, 111 (52.4%) had RRMS, 50 (28.3%) had SPMS, 30 (14.2%) had PPMS, and 9 (4.2%) did not have a phenotype identified. Assistive devices for ambulation (ie, cane, walker, or wheel-chair) were used by 131 (62.4%).

Identified reasons for admission are summarized in 

. The most common systems cited were neurologic (41.6%), followed by infectious (24.8%). The most common overall reason for admission was urinary tract infection (10.3%), followed by neurologic deficits without identifiable cause (9.2%). Of interest, as they are common issues for those with MS, gait instability and falls combined to be the third most common neurologic cause of admission (3.4%), and 6 of the 9 falls caused fractures (2.3% of admissions), including facial, femur, ankle, and greater tuberosity fractures.

Approximately half of the admitted patients were not on any DMT (48.2%) (

). The median age among the group not taking any DMT was comparable to the median age of the treated group. The median age was lower for the group taking fingolimod and natalizumab (40 years and 46 years, respectively), compared with the other treatment groups (

). The most common DMTs for admitted patients were ocrelizumab and dimethyl fumarate (13.1% and 12.1%, respectively). No major trends were identified when causes of admission were compared with DMT used. Also, no differences were observed in admission due to infectious causes in patients on high-efficacy therapy vs low- to moderate-efficacy therapy. The most common causes of admission for untreated patients were MS exacerbation (15.7%), UTI (11.0%), and pulmonary infection (7.9%). The most common causes for admission in patients who were on a DMT were neurologic deficits of unclear etiology (13%), UTI (13%), and skin infection (5.8%).

The 30-day readmission rate was 14.9%. The most common cause for readmission was pain (25.0%), followed by infectious (22.5%), cardiogenic (15.0%), and neurologic (15.0%) causes.

Services During Hospitalization and Discharge

The neurology service was consulted in 69% (184 times) of the admitted and readmitted cases from the emergency department (ED). Of these consults from the ED, 79% were admitted to the neurology service. The average length of stay was 6.1 days. Longer lengths of stay were observed for individuals admitted to the cardiology service (9.1 ± 5.0; 

). No major discrepancies in ancillary evaluations from physical therapy, occupational therapy, and speech pathology services were noticed among the different services. Compared with other services, patients admitted to the cardiology service were more likely to be discharged with home health occupational therapy (37.5%; 

). Patients admitted to the inpatient neurology service were slightly more likely to be discharged to acute rehabilitation (6.9%) in comparison with the other services. Surgical and oncologic services more often discharged patients to skilled nursing facilities.

Our study aimed to evaluate the reasons for admission in patients with MS at Duke University Hospital in Durham, North Carolina. This study had similar results to what has been reported in the Portuguese and Finnish populations, where UTIs were the most common cause for admission.

 Bladder dysfunction is common among individuals with MS and is likely to contribute to this presentation. Other potentially contributing factors include physical limitations, the use of immunosuppressive agents, and age. Developing better management of and techniques for bladder dysfunction may decrease the admission rate for individuals with MS.

The second most common reason for admission was neurologic complaint without an identifiable cause. Interestingly, 70% of this group had a documented progressive course of disease, either SPMS or PPMS, which potentially indicates smoldering progression as the cause for ED presentation.

Although MS hospitalization rates have declined dramatically over the past 25 years, they remain higher than in the general population.

 One possible reason is that there may be a lower hospital admission threshold for individuals with MS. As a result, any neurologic symptom in a person with MS may be considered a reason for admission, despite a lack of clear etiology. A potential strategy to reduce unnecessary admissions would be for outpatient providers to be more proactive in performing workups and to improve access to urgent outpatient appointments.

Almost half (48.5%) of the admitted patients in our cohort were not on any DMT. That is almost 3 times more than what was seen in the outpatient Duke MS Center, where data from the center's database show 16.7% of patients were not on a DMT. One could think this is due to a tendency to discontinue DMTs as patients with MS age

; however, the median age among the group with no DMT was comparable to the median age of the groups with DMT. Though we now have more treatment options for MS, our study results suggest that the individuals with MS with the highest health care utilization are those who are untreated.

Untreated MS may lead to more hospitalizations because of symptom complications of and/or accumulated disability.

 Additionally, the untreated group may include patients with chronic progressive forms of MS that are less likely to respond to therapy. The most common DMTs in the admitted patients were ocrelizumab and dimethyl fumarate (13.2% and 12.2%, respectively). Ocrelizumab is the only DMT approved for PPMS and RRMS that does not carry a significant risk of progressive multifocal leukoencephalopathy,

 potentially explaining why it is the most prescribed among this group. It is still, however, part of a group of B cell–depleting immunosuppressive medications that carry a higher infection risk than other available high-efficacy therapies. The median ages of patients taking natalizumab and fingolimod were lower (46 and 40 years, respectively) than those on other DMTs. This may be explained by the fact that fingolimod is preferentially prescribed to younger patients, given that the risk of bradycardia increases with age.

The cohort's length of stay and readmission rates were similar to those of the general population (6.1 vs 5.5 days of stay, and 14.9% vs 15.5% readmission rates, respectively).

 Prior studies’ results have shown a longer length of stay for those with MS.

 The shorter lengths of stay seen in our study may be due to greater availability of DMTs in recent years decreasing baseline disability.

 The longest lengths of stay were observed for patients admitted to the cardiology service (9.1 ± 5.0). This may be explained by the fact that the degree of recovery is impacted by the area of the comorbidity.

Limitations of this study include being retrospective and the short analysis period (2 years) at a single institution.

Our study evaluated the most common reasons for hospital admissions among MS patients from a single-center cohort, identifying UTIs as the leading cause, potentially due to bladder dysfunction associated with MS. It also highlighted that nearly half of the admitted patients were not on DMTs, suggesting that untreated MS may contribute to increased hospitalizations. Improving access to outpatient care and sub-sequent workups may help reduce preventable admissions.

Future studies could focus on evaluating admissions at multiple hospitals across the US, comparing different time periods as well as those admitted patients vs nonadmitted patients. Additional research is needed to identify the factors that can be addressed to support individuals with MS and reduce preventable hospitalizations.

Reasons for Hospital Admission in Individuals With Multiple Sclerosis

From Direccion Nacional de Sanidad Policial, CASMU IAMPP, Hospital Británico, Montevideo, Uruguay (VR) and Clinica Colombia, Hospital San Jose, Bogotá, Colombia. 

Valeria Rocha, MD, Morales 2560, 2nd floor. Neurology. Montevideo, Uruguay 11600; 

Latin America (LATAM) is a diverse region with more than 30 countries, each varying in cultural, economic, and social aspects. While multiple sclerosis (MS) care in LATAM has improved, there are still challenges to address. Epidemiologic studies have shown varying incidence rates of MS in the region, influenced by factors such as genetics, environmental conditions, and regional diversity. Scientific research on MS in LATAM has increased, with publications and consensus guidelines emerging. However, access to disease-modifying treatments remains a significant challenge in many countries due to affordability issues and limited availability of certain therapies. The region also faces obstacles in providing comprehensive MS care, including rehabilitation programs and diagnosis tools. There are collaborative efforts and initiatives in LATAM that are working toward overcoming these challenges and improving the overall quality of care for people with MS in the region.

The authors have declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Latin America (LATAM) is a large region comprising most of the American continental mass. It is located between the northern borders of Mexico and the archipelago of Tierra del Fuego in Argentina and includes the Caribbean islands. Its more than 30 countries differ widely in cultural, ethnic, economic, political, religious, and social aspects, making LATAM a heterogeneous region.

Multiple sclerosis (MS) care has significantly improved in LATAM in recent years. However, there is still much to be done. In October 2024, we surveyed via email MS neurologists from many LATAM countries to gain better insight into the region's perceived strengths and difficulties. The survey included questions about the availability of disease-modifying treatments (DMTs), neurorehabilitation, MS centers, and MS patient associations, the use of generic drugs, and whether patients participated in clinical trials. Neurologists from 14 countries were invited to collaborate and responses were collected from 8: Argentina, Bolivia, Chile, Colombia, Ecuador, Paraguay, Peru, and Uruguay. Additional information sources, such as the Atlas of MS and published data, were also consulted to broaden knowledge.

Historically, data-based information on the epidemiology of MS in LATAM has been scarce, particularly in Central American and Caribbean countries, resulting in limited data availability for clinicians, researchers, and patients.

 MS in LATAM populations exhibits distinct characteristics when compared with populations in Europe and North America. The prevalence and incidence of MS in LATAM are lower than those in Northern Europe and North America.

 A systematic review of the disease's epidemiology in LATAM found that the reported incidence ranged from 0.15 to 3 cases per 100,000 person-years, and prevalence ranged from 0.75 to 38.2 cases per 100,000 inhabitants in the 13 studies analyzed.

 The prevalence varies, with higher rates in regions with greater European ancestry (eg, Argentina, Chile, Brazil, Uruguay, and Mexico).

 Unlike in northern latitudes, there is less correlation between latitude and MS prevalence in LATAM.

Several factors contribute to incidence rates of MS in LATAM. Epidemiological studies

 show an extremely low prevalence of MS among Amerindians; this has been attributed to protective ancestral Asian genetics and, possibly, environmental factors. Multiracial Latin Americans of indigenous ancestry and biracial Latin Americans of African ancestry have more susceptibility to MS, which some studies say is due to the historical introduction of the European 

 Another significant finding highlighted the prevalence of vitamin D deficiency among populations living in regions with high ultraviolet radiation (UVR), such as Ecuador, where up to 70% of the general population was reported deficient in serum 25-hydroxyvitamin D.

 This deficiency persists despite the tropical climate, which is generally associated with adequate UVR exposure necessary for vitamin D synthesis.

 Other studies suggest that characteristics unique to LATAM, such as geographical diversity and socioeconomic factors, may explain regional differences in MS prevalence and incidence. Continued exploration of local environmental factors is essential to understand their impact on MS and to develop targeted interventions.

 Some data have shown a lower prevalence of progressive forms of MS in LATAM

; however, this is not a consistent observation.

 The age of onset is similar for people from LATAM to that reported for people from northern hemisphere regions.

 Clinical features are comparable across LATAM, European, and African cohorts.

 One difference is that optic neuritis seems to occur less frequently among LATAM patients.

 However, no strong evidence indicates systematic differences in the clinical presentation and severity

 of MS in LATAM compared to high-prevalence regions; further research is necessary in this area.

In the past, clinical research on MS in LATAM did not focus on local needs and priorities

; however, this is changing. According to PubMed, the National Library of Medicine's database, the number of MS papers published by LATAM researchers has risen exponentially since 2010

 and research from LATAM groups is being published in high-profile scientific publications.

The creation of MS consensus guidelines has also increased in the last few years and now exist in LATAM countries like Argentina, Brazil, Mexico, and Peru.

 There are also joint publications on consensus statements with participants from many LATAM countries.

 Despite this, LATAM populations are not usually included in clinical trials: Only respondents from Argentina, Brazil, Chile, Colombia, Peru, and Mexico reported current or past involvement when asked about participation in phase 3 clinical trials. Finally, the Latin American Committee for Treatment and Research in Multiple Sclerosis (LACTRIMS), founded in 1999, has facilitated LATAM meetings and publications from collaborations.

Much of the data provided by adult MS patients for the 2017 McDonald criteria came from people with Western European genetic or ethnic backgrounds who presented with typical symptoms.

 Validation of the 2017 McDonald criteria has not been widely conducted in LATAM, and there is uncertainty regarding their applicability across LATAM countries.

 Therefore, it is strongly recommended that other regional diseases, such as certain infectious and nutritional conditions that could mimic MS, be ruled out.

In LATAM, more than 70% of people with MS reported visiting at least 2 neurologists before being diagnosed, except respondents from Peru (59.9%). A self-reported patient survey conducted by Carnero and colleagues

 reported that 53% (Honduras) to 96% (Argentina and Costa Rica) of people with MS have complete or partial health insurance coverage for brain and/or spinal cord MRI. Similar results were reported for evoked potential tests and lumbar puncture (LP). In all countries, MRI was the most frequently used tool to establish MS diagnosis (nearly 100% of cases), but differences were found in the frequency of MRI use during follow-up. Rates of LP varied significantly, with ranges as low as 38% (Guatemala) to as high as 85.5% (Costa Rica).

Many countries in LATAM have difficulty providing recommended MS health care due to multiple factors, including delays in access, a shortage of neurologists, segmented health care systems, and restricted economic resources.

Charlotta Saldert, PhD

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