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Quality of life differences between African Americans and Hispanic Americans with multiple sclerosis

Quality of life differences between African Americans and Hispanic Americans with multiple sclerosis Background: In comparison to non-minority patients with multiple sclerosis, minority research in multiple sclerosis continues to be only a few percent of the literature. Often, the comparator group is with the Caucasian populations of the world, who themselves comprise of non-ubiquitous groups. Comparisons between minority groups have not been done as they relate to quality of life, partly because the populations are smaller. Our study will compare the quality life differences between two minority populations living in the same geographic and urban area. Methods: This study utilized cross-sectional data from an observational prospective cohort study. A total of 28 minority patients were included in this study. All patients were on a disease modifying therapy. Demographic information was obtained. The primary outcome measure was the MSQLI and all scores were derived from the MSQLI user’s manual. Results: The MSQLI scores of the Mental Health Index were lower in all areas for Hispanic White MS patients as compared to Non-Hispanic African American patients, but 3 of 5 were statistically significant: MHI total score, MHI anxiety, and MHI behavioral control subscores (all p < 0.05). When investigating if EDSS associated with MSQLI measures, independent of minority group, the only noted difference was between the mild (EDSS< or = 3) and the moderate group (EDSS 3.5–5.5) in the Physical Components Score and Health Transition Score (p = 0.028 and p <0.05). Conclusion: The study begins to elucidate differences in quality life measures between minorities with multiple sclerosis potentially leading to culturally competent care. Key practice points disability and disproportionately affects women [1, 2]. The cause of MS is still unknown. However, it is believed to be 1. Quality of Life differences exist between patients associated with genetic factors and environmental expo- based on race, ethnicity, and socioeconomic status sures [3]. There is no cure for MS and as a result, treat- 2. Mental health issues of multiple sclerosis patients ment modalities are aimed at reducing disease progression can vary based of race, ethnicity, and other non- and managing symptoms [4]. Symptoms include fatigue, disease based factors in multiple sclerosis patients gait imbalance, bowel and bladder dysfunction, visual 3. Clinicians may benefit patients from asking about disturbances, cognitive dysfunction, sexual dysfunction, and potentially addressing their MS patient’s quality pain and depression, which negatively affect a patient’s of life issues health-related quality of life (HRQoL) [1, 2, 5]. While the physical manifestations of MS are assessed using the Kurtzke Expanded Disability Status Scale Introduction (EDSS), the psychological manifestations are evaluated Multiple Sclerosis (MS) is a chronic, inflammatory, de- by a patient’s health-related quality of life (HRQoL). The myelinating, and ultimately progressive disease of the cen- EDSS is the most common outcome measure of impair- tral nervous system that causes physical and cognitive ment/disability for MS patients [6] and scores range * Correspondence: Bijal@ucla.edu from 0 to 10 in 0.5 increments with higher scores indi- Department of Neurology, The David Geffen School of Medicine, cating higher levels of disability. On the other hand, the Harbor-UCLA Medical Center, Los Angeles Biomedical Institute, Torrance, USA © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 2 of 8 HRQoL requires a broader measure of disease burden status, use of smoking tobacco, alcohol use, illicit drug compared to physical impairment and disability level user and the number of comorbidities were collected at alone [7]. The HRQoL aims to measure a person’s more baseline. Clinical MS characteristics such as type of MS comprehensive well-being including physical, mental and year of MS diagnosis were also collected at baseline. and social health [7]. Previous studies have suggested a higher correlation of Primary outcome measure MS with those of European descent [8, 9]. However, in a HRQoL was measured using the MSQLI and all scores 2015 article published in Neurology Clinical Practice, were derived using the MSQLI user’s manual [13]. The Khan and colleagues revealed that out of 60,000 published MSQLI is a comprehensive patient reported HRQoL articles on MS, only 113 focused on African-Americans measure specifically tailored for MS patients [13]. It is (about 0.20%) and even less, 23, focused on Hispanic made up of 10 components: 1) Generic Quality of Life Americans (about .040%) with MS [10]. The African- Measure: Short Form Health Status Questionnaire American population in the United States (U.S) is pro- (SF-36), 2) Modified Fatigue Impact Scale (MFIS), 3) jected to rise from 13.3% in 2016 to 17.9% in 2060 MOS Pain Effects Scale (PES), 4) Sexual Satisfaction [11, 12]. The Hispanic population in the U.S is projected Scale (SSS), 5) Bladder Control Scale (BLCS), 6) Bowel to rise from 17.8% in 2016 to 28.6% in 2060 [11, 12]. Control Scale (BWCS), 7) Impact of Visual Impairment African-Americans and Hispanics make up the two largest Scale (IVIS), 8) Perceived Deficits Questionnaire (PDQ), minority groups in the U.S, but only represented less than 9) Mental Health Inventory (MHI), 10) MOS Modified 1% of the published articles on MS. African-Americans Social Support Survey (MSSS) [13, 14]. The SF-36 gener- and Hispanics with MS are understudied [10]. However, ates two generic summary scores, the Physical Compo- in the past decade MS literature has shown an increased nents Summary Scale (PCS) and the Mental Component interest in MS health in ethnic populations [10]. Summary Scale (MCS). These 10 components reflect the With the importance of HRQoL in MS and African- symptoms that occur most often in MS [13, 14]. Americans and Hispanics being underrepresented in MS Table 1 lists the MSQLI components and scoring scale literature, we compared the HRQoL differences between for reference. The MSQLI was administered by study two understudied minority populations in a large urban personnel 6 months from baseline and on the last study area. The primary objective of this analysis was to examine visit. For this study, only the 6 month MSQLI data (a the differences in HRQoL between Non-Hispanic African- single-time point) was analyzed. Of this baseline sample Americans and Hispanic White MS patients using the (N = 46), 28 study participants completed the MSQLI. HRQoL data from an observational prospective cohort The MSQLI was administered either in-person or over- study. The secondary objective of this analysis was to the-phone in English or Spanish. For the Spanish-speaking compare the HRQoL data to the EDSS scores, age and sex study participants, our Spanish-speaking research associates of these racial and ethnic minority MS patients. translated the MSQLI to Spanish because no Spanish ver- sion of the MSQLI existed. Methods Study population Secondary outcome measures This study used cross-sectional data from an observational In addition to the MSQLI, an EDSS was administered by prospective cohort study (N = 46) comparing the level of a neurologist at each study visit (every 3 months). In this vitamin A in relapsing remitting (RRMS) and secondary study, the EDSS score closest to the MSQLI adminis- progressive Multiple Sclerosis (SPMS) patients. Subjects tered date was used to compare to the 10 MSQLI com- for this study were individuals with a diagnosis of RRMS ponents. EDSS scores were distributed into 3 categories: or SPMS and with normal vitamin D levels (38–98 mcg/ mild disability represented by an EDSS score of ≤ 3, dL) or supplemented with vitamin D to reach a normal mild-moderate disability represented by an EDSS score level. Study participants spoke either English and/or Span- of 3.5–5.5 and moderate-severe disability represented by ish. They also had to be currently taking a disease modify- an EDSS score > 5.5 (patients requiring assistance or as- ing therapy or MS treatment and willing to participate in sistive devices for walking). The EDSS scores of each an MRI at our facility every 6 months. Of the total 46 pa- group were also compared to eliminate disability level as tients, 28 met the criteria for inclusion. This research has a possible causation of the significant MSQLI differences been reviewed and approved by a Human Subjects Com- found between groups. Moreover, demographic informa- mittee (IRB) at the Los Angeles Biomedical Institute. tion such as ethnicity-race, age and sex of the 28 study participants were compared to the MSQLI data. For the Demographic and MS characteristics measures ethnicity-race comparison, only the MSQLI results of Demographic information such as age, sex, language, Non-Hispanic African-American and Non-White Hispanic race/ethnicity, education level, marital status, employment study participants were compared. Non-Hispanic White Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 3 of 8 Table 1 MSQLI Measure and Scoring Outcome Measure Scale SF-36 HT single item covering change in health status over the last year 1-5 SF-36 PCS generic physical components summary scale 0-100 SF-36 MCS generic mental component summary scale 0-100 MFIS impact of fatigue on a patient’s activities 0-84 PES impact of pain on a patient’s mood and behavior 6-30 SSS sexual satisfaction problems 4-24 BLCS bladder control problems 0-22 BWCS bowel control problems 0-26 IVIS impact of visual problems 0-15 PDQ perceived cognitive impairment 0-80 MHI Total overall emotional functioning 0-100 MHI Anxiety anxiety presence 0-100 MHI Depression depression presence 0-100 MHI Behavioral the ability to control one’s behaviors 0-100 Control MHI Positive Affect experience of positive moods 0-100 MSSS perceived social support 0-100 Abbreviations: MSQLI multiple sclerosis quality of life inventory, SF-36 36-item short form generic health status questionnaire, HT health transition item, PCS physical components summary scale, MCS mental component summary scale, MFIS modified fatigue impact scale, PES MOS pain effects scale, SSS sexual satisfaction scale, BLCS bladder control scale, BWCS bowel control scale, IVIS impact of visual impairment scale, PDQ perceived deficits questionnaire, MHI mental health inventory, MSSS modified social support survey SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat worse, 5, much worse Higher scores indicate better health Higher scores indicate greater amount of measure Higher scores indicate better mental health study participants and those of Asian descent were ex- calculated to determine which of the groups contributed cluded from the analysis due to low subject numbers. For to the differences. LibreOffice spreadsheets version 5.3 the age category, study participants were divided into 3 age was used for all statistical tests. groups: the youngest group representing those born be- tween 1980 and 1994 (ages 23–37), the mid-aged group Results representing those born between 1965 and 1979 (ages 38– MSQLI and ethnicity-race 52), and the older group representing those born between Twenty-eight patients with MS completed the MSQLI. 1950 and 1964 (ages 53–67). Demographic and clinical MS characteristics of the pa- tients are given in Table 2. MSQLI scores on the Mental Statistical analysis Health Inventory (MHI) measures were lower in all Descriptive statistics were used to describe the sample areas for Hispanic Whites compared to Non-Hispanic and overall data. In order to analyze the MSQLI numer- African Americans. The average scores for the MHI be- ical data by ethnicity-race, EDSS scores, age and sex, a tween Non-Hispanic African Americans and Hispanic Student’s t-test was performed to compare the means Whites are shown in Table 3. Although Hispanic Whites between two groups. A two-tailed distribution and two presented lower MHI averages, only 3 MHI measures samples, unequal variance was used for the Student’s out of 5 were found to be statistically significant: MHI t-test. Results with a P-value of less than 0.05 were con- total score, MHI anxiety and behavioral control subscales. sidered significant. For the SF-36 health transition score, Non-Hispanic African Americans indicated a better total the Mann-U Whitney test was used instead due to the mental health score (84.11 vs. 69.05, P-value = 0.018), data type being of ordinal categorical data. For measures lower anxiety (89.20 vs. 63.14, P-value = 0.001) and better that had more than two groups to compare such as the behavioral control (90.50 vs. 73.57, P-value = 0.026) com- EDSS scores and age, an Analysis of Variance (ANOVA) pared to Hispanic Whites. Interestingly, Non-Hispanic was used to compare the means of the multiple groups. African Americans also demonstrated a higher SF-36 For those comparisons that showed a significant differ- Mental Component Summary Scale (MCS) score (54.48 ence (P-value ≤ 0.5), the means of each group were vs. 49.97, P-value = 0.392) compared to Hispanic Whites. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 4 of 8 Table 2 Demographic and clinical characteristics of patients Table 3 Average MHI between African Americans and Hispanic Whites Variable Value Outcome African American Hispanic White P-value Ageª, years (mean ± SD), range 41.2 ± 11.4 (21–62) MHI Total Score 84.11 69.05 0.018 Sex, n (%) MHI Anxiety 89.20 63.14 0.001 Female 18 (64.3%) MHI Depression 81.50 71.79 0.273 Male 10 (35.7%) MHI Behavioral Control 90.50 73.57 0.026 Language, n (%) MHI Positive Affect 75.50 67.86 0.267 English 22 (78.6%) Abbreviations: MHI mental health index Spanish 6 (21.4%) Higher scores indicate better mental health Race/Ethnicity, n (%) Captured in bold is P = < 0.05 White/Non-Hispanic 2 (7.1%) Although not statistically significant, Hispanic Whites White/Hispanic 14 (50.0%) scored lower in mental health even among a generic African American/Non-Hispanic 10 (35.7%) measure of mental health. Furthermore, Hispanic Whites Asian/Non-Hispanic 1 (3.6%) reported less comorbidities than Non-Hispanic African Asian/Hispanic 1 (3.6%) Americans (0.14 vs. 1.30, P-value = 0.001). All, but two Education level, n (%) Hispanic White patients reported 0 comorbidities while < High school 7 (25.0%) all, but one patient of the latter group reported at least 1 High school diploma or GED 6 (21.4%) comorbidity. The top 3 comorbidities reported were Associate’s Degree (in progress) 2 (7.1%) hypertension (high blood pressure), dyslipidemia (high cholesterol) and cardiovascular disease (heart disease) re- Associate’s Degree (completed) 2 (7.1%) spectively. Hypertension accounted for 50% of the comor- Bachelor’s Degree (in progress) 3 (10.7%) bidities reported including being the only comorbidity Bachelor’s Degree (completed) 6 (21.4%) reported by the Hispanic White group. Additionally, there Master’s Degree (in progress) 1 (3.6%) was no statistically significant difference found between Master’s Degree (completed) 1 (3.6%) the EDSS scores of Hispanic Whites and Non-Hispanic Marital Status, n (%) African Americans indicating that the statistically signifi- Single 16 (57.1%) cant differences found were independent of the severity of Married 8 (28.6%) their EDSS based disability. Hispanics with MS had an Divorced 4 (14.3%) average EDSS score of 4.21 and African Americans had an average of 4.75. Moreover, Hispanics with MS had an Employment Status average MS disease duration of 5 years compared to 5.2 Employed 11 (39.3%) years for Non-Hispanic African Americans. There were Unemployed 11 (39.3%) also no statistically significant differences found between On Disability or Supplemental Security Income 6 (21.4%) the use of illicit drugs or the use of interferon medications Current or Former Smoker 11 (39.3%) between the two groups, as interferons have been reported Current or Former Alcohol Drinker 14 (50.0%) to exacerbate depressive symptoms [15]. Of the 42% of Current or Former Illicit Drug User 12 (42.9%) Hispanic Whites and Non-Hispanic African Americans on Clinical Form of MS, n (%) interferon MS medications, 70% of those were Hispanic Relapsing-remitting 26 (92.9%) White and 30% were Non-Hispanic African American. Rebif and Betaseron were tied for the most commonly re- Secondary progressive 2 (7.1%) c ported interferon medication. There were no other statis- Disease Duration , years (mean ± SD), range 5.5 ± 4.4, (1–10) tically significant differences found in the remaining Number of Comorbidities MSQLI measures between Non-Hispanic African Ameri- 0 15 (53.6%) cans and Hispanic Whites. 1 9 (32.1%) 2 3 (10.7%) MSQLI and EDSS 3 1 (3.6%) EDSS scores were categorized into 3 groups: mild dis- EDSS score, (mean ± SD), range 4.2 ± 2.0 (1–8) ability (EDSS score ≤ 3), mild-moderate disability (EDSS score 3.5–5.5) and moderate-severe disability (EDSS Abbreviations: SD standard deviation, GED General Education Diploma, MS multiple sclerosis, EDSS expanded disability status scale score > 5.5). When comparing all the MSQLI measures ªAge when MSQLI was administered to the EDSS scores, statistically significant differences Includes academic, occupational, technical, or vocational programs Year of MS diagnosis to MSQLI administered date were only found between the mild disability group and Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 5 of 8 the moderate-severe disability group in the SF-36 Phys- statistically significant differences in the remaining ical Components Summary Scale (PCS) and SF-36 Health MSQLI mean scores. Transition (HT) score. The average scores for the SF-36 PCS and SF-36 HT between the mild and moderate-severe MSQLI and sex disability groups are shown in Table 4. Not surprisingly, There were no statistically significant differences in the patients with an EDSS ≤ 3 indicated a better physical health mean MSQLI scores between females and males. Add- score (43.56 vs. 33.21, P-value = 0.028) and a better change itionally, the average EDSS for females was 3.75 and 4.39 in health status over the last year (1.56 vs. 2.80, P-value < for males, which was also not statistically significant. 0.05) compared to those with an EDSS score of greater than 5.5. Note, that a higher physical components score corresponds with a better physical health and a lower Discussion SF-36 HT score represents a lesser change in health status In this study, we evaluated the MSQLI data of minority over the previous year. There were no statistically signifi- MS patients to identify demographic and disease charac- cant differences found in the remaining MSQLI mean teristics significantly associated with the quality of life of scores between these 3 EDSS groups. these patients residing in a large urban area. We found significant racial/ethnic differences in the HRQoL of people with MS. In this study, Hispanic White MS MSQLI and age patients reported a worse overall mental health score MS patients were divided into 3 age categories: the compared to Non-Hispanic African Americans. More youngest group representing those born between 1980 specifically, Non-Hispanic African Americans were and 1994 (ages 23–37), the mid-aged group representing found to have lesser anxiety and better behavioral those born between 1965 and 1979 (ages 38–52), and control compared to Hispanic Whites based on self- the older group representing those born between 1950 report. Hispanic Whites also reported a statistically and 1964 (ages 53–67). In terms of the age of the MS significantly lower number of comorbidities than patients, significant differences were found in the SF-36 Non-Hispanic African Americans. Several studies have Health Transition (HT), the Modified Fatigue Impact reported that physical and mental comorbidities nega- Scale (MFIS) and the Perceived Deficits Questionnaire tively affect HRQoL [16–18]. However, hypertension was (PDQ) scores. The average scores for the SF-36 HT, the only comorbidity reported by Hispanic Whites and lit- MFIS and PDQ between the 3 age groups are shown in tle is known about the relationship between hypertension Table 5. The youngest group of MS patients indicated a and HRQoL in MS patients and is often physically asymp- better change in health status over the last year compared tomatic [19]. Additionally, both groups reported similar to the oldest group (1.60 vs. 2.88, P-value = < 0.05), the averages of EDSS scores and MS disease duration. No sta- oldest group indicated a greater impact of fatigue com- tistically significant differences were found in the use of pared to the youngest and mid-aged groups (2.88 vs. 1.60 illicit drugs or interferon medications as these can impact vs. 2.22, P-value = 0.035) and the oldest group indicated a HRQoL as well. Racial and ethnic minorities in general greater perceived cognitive impairment compared to the tend to have poorer mental health, barriers to health, and mid-age group (37.33 vs. 18.22, P-value = 0.027). Addition- receive lower quality mental health care [20]. However, ally, no statistically significant differences in the EDSS despite sharing similar socio-demographic backgrounds, scores of the 3 age groups were found indicating that the MS disease duration, and disability levels, the Hispanic statistically significant differences found are independent MS patients perceived having worse psychological func- of the severity of their disability. The average EDSS score tioning. Our results suggest a health disparity in the men- for the youngest, mid and oldest age groups were 3.00, tal health of Hispanics with MS. This may be related to 4.94, and 4.67 respectively. There were also no other language barriers and/or cultural differences in health be- haviors and health attitudes. Language barriers are a major constraint in the treatment and care of Hispanics in gen- Table 4 Average SF-36 between 2 EDSS groups eral [21]. Additionally, in Hispanic culture there is a per- Outcome EDSS ≤ 3 EDSS > 5.5 EDSS > 5.5 ception that mental health services are only for people SF-36 PCS 43.56 33.21 33.21 who are severely disturbed and therefore seeking mental SF-36 HT 1.56 2.80 < 0.05 health services can be a stigma rather than a resource Abbreviations: SF-36 36-item short form generic health status questionnaire, [22, 23]. Future research is needed to analyze the EDSS Kurtzke Expanded Disability Status Scale, PCS physical components mental health of Hispanics and African Americans summary scale, HT health transition item Higher scores indicate better physical health with MS especially since the population of Hispanics SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat in the U.S with MS will increase as the total Hispanic worse, 5, much worse Captured in bold is P = < 0.05 population increases. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 6 of 8 Table 5 Average MSQLI between 3 Age Groups Outcome Born 1980–1994 (youngest) Born 1965–1979 (middle-aged) Born 1950–1964 (oldest) P-value SF-36 HT 1.60 2.22 2.88 < 0.05 MFIS 22.60 21.44 46.00 0.035 PDQ 24.67 18.22 37.33 0.027 Abbreviations: MSQLI multiple sclerosis quality of life inventory, SF-36 36-item Short Form Generic Health Status Questionnaire, HT health transition item, MFIS modified fatigue impact scale, PDQ perceived deficits questionnaire SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat worse, 5, much worse Higher scores indicate greater impact of fatigue Higher scores indicate greater perceived cognitive deficits Captured in bold is P = < 0.05 We also found that MS patients with mild disability determinants and concerns of a patient’soverall health (EDSS ≤ 3) reported a better overall physical health and status from the patient’sperspective [30]. It can detect a better change in health status over the last year com- the subtle disease-specific changes in MS that the pared to those of moderate-severe disability (EDSS > 5.5). EDSS cannot [31]. The MSQLI was selected as the These expected findings validate the EDSS because the measure of HRQoL in this study because of its com- EDSS measures disability on a scale of 0–10 with higher prehensiveness and specificity to MS patients. In a side scores indicating a higher level of disability so with scores to side comparison of 3 different MS-specific HRQoL ≤ 3 one would anticipate patients with lower disability measures, the MSQLI was shown to be more compre- levels to report better physical health measures and better hensive in its coverage of the common MS symptoms changes in health status. The youngest group (ages 23–37) [14]. Additionally, the MSQLI has been shown to work of MS patients reported a better change in health status effectively in a field test with 300 North American pa- over the last year compared to the oldest group (ages 53– tients with MS and a broad range of physical impair- 67), the oldest group of MS patients reported a greater im- ment (EDSS = 0–8.5) [14]. It is continuously being pact of fatigue compared to all age groups (ages 38–67) used as an outcome measure in clinical trials [30, 32] and lastly that the oldest group of MS patients reported a and has been validated for use in older MS adults and greater perceived cognitive impairment compared to the cognitively impaired MS adults [33, 34]. Most import- mid-aged group (ages 38–52). The youngest group (ages antly, it is well documented that patients with MS have 23–37) also had the lowest average EDSS score (EDSS = 3) a poorer quality of life than the healthy population and of all age groups. Moreover, the oldest group (ages 53–67) people with other chronic diseases [6, 29, 35–37]. This was found to have the most fatigue impact. Fatigue is the study provides added insight into how MS impacts and most common physical symptom reported by MS patients affects the HRQoL of minority patients with MS living [24]. In a pilot study of Latinos with MS, fatigue was in the United States. found to have the greatest impact on daily activities [21]. However, this study has some limitations. Our sample These results can be explained by the fact that with older size was small. There may have been a loss of translation age comes more fatigue. In addition, the oldest group in the Spanish version of the MSQLI because we trans- (ages 53–67) indicated more perceived cognitive impair- lated the MSQLI into Spanish. However, others have ment compared to the mid-aged group (ages 38–52). No translated different scales with success. For example, the significant MSQLI findings were found between females quality of life in neurological disorders (Neuro-QoL) and males. According to our results, the MSQLI and measurement system is another HRQoL instrument for EDSS are independent valid measures of disability in our adults and children with neurological disorders [38]. It cohort. was originally developed in English and shortly after The EDSS may be the most common outcome meas- translated to Spanish [38]. In a paper analyzing the ure of impairment/disability used by MS specialists and Spanish version of the Neuro-QoL, Correia and col- neurologists, however it has limitations [6, 25]. For one, leagues concluded that both the adult and pediatric it is biased towards mobility [6]. Second, there are issues Spanish items were considered conceptually equivalent with inter-rater reliability in the minimal- moderate to the English source [38]. In a similar study, Fernandez range of disability [26]. Third, physical function is only and colleagues investigated the validity and reliability of one aspect of a patient’s experience [27, 28]. In a quality the Spanish version of the Multiple Sclerosis Inter- of life study of MS patients, Göksel Karatepe and col- national Quality of Life (MusiQoL) questionnaire [39]. leagues found that disability was negatively correlated They concluded the Spanish version of the MusiQoL with physical and mental health status in MS patients questionnaire was a valid and reliable instrument for [29]. The EDSS is and should be complemented by mea- measuring quality of life in patients with MS in Spain sures of HRQoL [30]. HRQoL measures reflect the key [39]. Lastly, the type of MS medication may impact Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 7 of 8 HRQoL. For instance, a patient who has to inject their 4. Thompson AJ, Toosey AT, Ciccarelli O. Pharmacological management of symptoms in multiple sclerosis: current approaches and future directions. medication on a daily basis may differ in their HRQoL Lancet Neurol. 2010;9:1182–99. compared to a patient with oral treatment. The study 5. Lublin FD, Reingold SC. Defining the clinical course of multiple sclerosis: was not powered for this comparison. results of an international survey. National Multiple Sclerosis Society (USA) advisory committee on clinical trials of new agents in multiple sclerosis. Neurology. 1996;46:907–11. Conclusions 6. Nortvedt MW, Riise T, Myhr KM, et al. Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology. 1999;53:1098–103. This study uniquely compared the quality of life analysis 7. Buchanan RJ, Huang C, Chakravorty BJ. Health-related quality of life among of two ethnic populations, African Americans and His- African Americans with multiple sclerosis. 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Population estimates of the United States, July 1, treating minority patients with MS should understand 2016 Retrieved from https://www.census.gov/quickfacts/fact/table/US/ how MS symptoms affect different ethno-racial groups PST045216 in order to provide culturally competent care to improve 12. U.S. Census Bureau (2014). National Population Projections, Table 10 Retrieved from https://www.census.gov/data/tables/2014/demo/popproj/ their quality of life. 2014-summary-tables.html 13. Ritvo PG, Fischer JS, Miller DM, et al. Multiple sclerosis quality of life Acknowledgements inventory: a user’s manual. National Multiple Sclerosis Society. 1997. https:// The authors would like to thank the Conrad N. Hilton Foundation for grant www.nationalmssociety.org/For-Professionals/Researchers/Resources-for- funding associated with the project. All the authors have no other relevant Researchers/Clinical-Study-Measures/Multiple-Sclerosis-Quality-of-Life- disclosures. Inventory-(MSQL 14. Fischer JS, LaRocca NG, Miller DM, et al. Recent developments in the Funding assessment of quality of life in multiple sclerosis. Mult Scler. 1999;5:251–9. Was provided by the Conrad N. Hilton Foundation. 15. De Jong HJI, Kingwell E, Shirani A, et al. Evaluating the safety of β- interferons in MS: a series of nested case-control studies. Neurology. 2017; 88(24):2310–20. Availability of data and materials 16. Turpin KV, Carroll LJ, Cassidy JD, et al. Deterioration in the health-related Data from the study will remain available for minimum of 3–10 years. quality of life of persons with multiple sclerosis: the possible warning signs. Mult Scler. 2007;13:1038–45. Authors’ contributions 17. Warren S, Turpin KV, Warren KG. Health-related quality of life in MS: issues DG writing manuscript, research design, data collection, JL database and interventions. Can J Neurol Sci. 2009;36:540–1. maintenance, data collection, data review, manuscript review, KB database 18. 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Quality of life differences between African Americans and Hispanic Americans with multiple sclerosis

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Copyright © 2019 by The Author(s).
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Medicine & Public Health; Neurology; Rehabilitation Medicine
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2056-6115
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10.1186/s40893-018-0038-6
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Abstract

Background: In comparison to non-minority patients with multiple sclerosis, minority research in multiple sclerosis continues to be only a few percent of the literature. Often, the comparator group is with the Caucasian populations of the world, who themselves comprise of non-ubiquitous groups. Comparisons between minority groups have not been done as they relate to quality of life, partly because the populations are smaller. Our study will compare the quality life differences between two minority populations living in the same geographic and urban area. Methods: This study utilized cross-sectional data from an observational prospective cohort study. A total of 28 minority patients were included in this study. All patients were on a disease modifying therapy. Demographic information was obtained. The primary outcome measure was the MSQLI and all scores were derived from the MSQLI user’s manual. Results: The MSQLI scores of the Mental Health Index were lower in all areas for Hispanic White MS patients as compared to Non-Hispanic African American patients, but 3 of 5 were statistically significant: MHI total score, MHI anxiety, and MHI behavioral control subscores (all p < 0.05). When investigating if EDSS associated with MSQLI measures, independent of minority group, the only noted difference was between the mild (EDSS< or = 3) and the moderate group (EDSS 3.5–5.5) in the Physical Components Score and Health Transition Score (p = 0.028 and p <0.05). Conclusion: The study begins to elucidate differences in quality life measures between minorities with multiple sclerosis potentially leading to culturally competent care. Key practice points disability and disproportionately affects women [1, 2]. The cause of MS is still unknown. However, it is believed to be 1. Quality of Life differences exist between patients associated with genetic factors and environmental expo- based on race, ethnicity, and socioeconomic status sures [3]. There is no cure for MS and as a result, treat- 2. Mental health issues of multiple sclerosis patients ment modalities are aimed at reducing disease progression can vary based of race, ethnicity, and other non- and managing symptoms [4]. Symptoms include fatigue, disease based factors in multiple sclerosis patients gait imbalance, bowel and bladder dysfunction, visual 3. Clinicians may benefit patients from asking about disturbances, cognitive dysfunction, sexual dysfunction, and potentially addressing their MS patient’s quality pain and depression, which negatively affect a patient’s of life issues health-related quality of life (HRQoL) [1, 2, 5]. While the physical manifestations of MS are assessed using the Kurtzke Expanded Disability Status Scale Introduction (EDSS), the psychological manifestations are evaluated Multiple Sclerosis (MS) is a chronic, inflammatory, de- by a patient’s health-related quality of life (HRQoL). The myelinating, and ultimately progressive disease of the cen- EDSS is the most common outcome measure of impair- tral nervous system that causes physical and cognitive ment/disability for MS patients [6] and scores range * Correspondence: Bijal@ucla.edu from 0 to 10 in 0.5 increments with higher scores indi- Department of Neurology, The David Geffen School of Medicine, cating higher levels of disability. On the other hand, the Harbor-UCLA Medical Center, Los Angeles Biomedical Institute, Torrance, USA © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 2 of 8 HRQoL requires a broader measure of disease burden status, use of smoking tobacco, alcohol use, illicit drug compared to physical impairment and disability level user and the number of comorbidities were collected at alone [7]. The HRQoL aims to measure a person’s more baseline. Clinical MS characteristics such as type of MS comprehensive well-being including physical, mental and year of MS diagnosis were also collected at baseline. and social health [7]. Previous studies have suggested a higher correlation of Primary outcome measure MS with those of European descent [8, 9]. However, in a HRQoL was measured using the MSQLI and all scores 2015 article published in Neurology Clinical Practice, were derived using the MSQLI user’s manual [13]. The Khan and colleagues revealed that out of 60,000 published MSQLI is a comprehensive patient reported HRQoL articles on MS, only 113 focused on African-Americans measure specifically tailored for MS patients [13]. It is (about 0.20%) and even less, 23, focused on Hispanic made up of 10 components: 1) Generic Quality of Life Americans (about .040%) with MS [10]. The African- Measure: Short Form Health Status Questionnaire American population in the United States (U.S) is pro- (SF-36), 2) Modified Fatigue Impact Scale (MFIS), 3) jected to rise from 13.3% in 2016 to 17.9% in 2060 MOS Pain Effects Scale (PES), 4) Sexual Satisfaction [11, 12]. The Hispanic population in the U.S is projected Scale (SSS), 5) Bladder Control Scale (BLCS), 6) Bowel to rise from 17.8% in 2016 to 28.6% in 2060 [11, 12]. Control Scale (BWCS), 7) Impact of Visual Impairment African-Americans and Hispanics make up the two largest Scale (IVIS), 8) Perceived Deficits Questionnaire (PDQ), minority groups in the U.S, but only represented less than 9) Mental Health Inventory (MHI), 10) MOS Modified 1% of the published articles on MS. African-Americans Social Support Survey (MSSS) [13, 14]. The SF-36 gener- and Hispanics with MS are understudied [10]. However, ates two generic summary scores, the Physical Compo- in the past decade MS literature has shown an increased nents Summary Scale (PCS) and the Mental Component interest in MS health in ethnic populations [10]. Summary Scale (MCS). These 10 components reflect the With the importance of HRQoL in MS and African- symptoms that occur most often in MS [13, 14]. Americans and Hispanics being underrepresented in MS Table 1 lists the MSQLI components and scoring scale literature, we compared the HRQoL differences between for reference. The MSQLI was administered by study two understudied minority populations in a large urban personnel 6 months from baseline and on the last study area. The primary objective of this analysis was to examine visit. For this study, only the 6 month MSQLI data (a the differences in HRQoL between Non-Hispanic African- single-time point) was analyzed. Of this baseline sample Americans and Hispanic White MS patients using the (N = 46), 28 study participants completed the MSQLI. HRQoL data from an observational prospective cohort The MSQLI was administered either in-person or over- study. The secondary objective of this analysis was to the-phone in English or Spanish. For the Spanish-speaking compare the HRQoL data to the EDSS scores, age and sex study participants, our Spanish-speaking research associates of these racial and ethnic minority MS patients. translated the MSQLI to Spanish because no Spanish ver- sion of the MSQLI existed. Methods Study population Secondary outcome measures This study used cross-sectional data from an observational In addition to the MSQLI, an EDSS was administered by prospective cohort study (N = 46) comparing the level of a neurologist at each study visit (every 3 months). In this vitamin A in relapsing remitting (RRMS) and secondary study, the EDSS score closest to the MSQLI adminis- progressive Multiple Sclerosis (SPMS) patients. Subjects tered date was used to compare to the 10 MSQLI com- for this study were individuals with a diagnosis of RRMS ponents. EDSS scores were distributed into 3 categories: or SPMS and with normal vitamin D levels (38–98 mcg/ mild disability represented by an EDSS score of ≤ 3, dL) or supplemented with vitamin D to reach a normal mild-moderate disability represented by an EDSS score level. Study participants spoke either English and/or Span- of 3.5–5.5 and moderate-severe disability represented by ish. They also had to be currently taking a disease modify- an EDSS score > 5.5 (patients requiring assistance or as- ing therapy or MS treatment and willing to participate in sistive devices for walking). The EDSS scores of each an MRI at our facility every 6 months. Of the total 46 pa- group were also compared to eliminate disability level as tients, 28 met the criteria for inclusion. This research has a possible causation of the significant MSQLI differences been reviewed and approved by a Human Subjects Com- found between groups. Moreover, demographic informa- mittee (IRB) at the Los Angeles Biomedical Institute. tion such as ethnicity-race, age and sex of the 28 study participants were compared to the MSQLI data. For the Demographic and MS characteristics measures ethnicity-race comparison, only the MSQLI results of Demographic information such as age, sex, language, Non-Hispanic African-American and Non-White Hispanic race/ethnicity, education level, marital status, employment study participants were compared. Non-Hispanic White Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 3 of 8 Table 1 MSQLI Measure and Scoring Outcome Measure Scale SF-36 HT single item covering change in health status over the last year 1-5 SF-36 PCS generic physical components summary scale 0-100 SF-36 MCS generic mental component summary scale 0-100 MFIS impact of fatigue on a patient’s activities 0-84 PES impact of pain on a patient’s mood and behavior 6-30 SSS sexual satisfaction problems 4-24 BLCS bladder control problems 0-22 BWCS bowel control problems 0-26 IVIS impact of visual problems 0-15 PDQ perceived cognitive impairment 0-80 MHI Total overall emotional functioning 0-100 MHI Anxiety anxiety presence 0-100 MHI Depression depression presence 0-100 MHI Behavioral the ability to control one’s behaviors 0-100 Control MHI Positive Affect experience of positive moods 0-100 MSSS perceived social support 0-100 Abbreviations: MSQLI multiple sclerosis quality of life inventory, SF-36 36-item short form generic health status questionnaire, HT health transition item, PCS physical components summary scale, MCS mental component summary scale, MFIS modified fatigue impact scale, PES MOS pain effects scale, SSS sexual satisfaction scale, BLCS bladder control scale, BWCS bowel control scale, IVIS impact of visual impairment scale, PDQ perceived deficits questionnaire, MHI mental health inventory, MSSS modified social support survey SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat worse, 5, much worse Higher scores indicate better health Higher scores indicate greater amount of measure Higher scores indicate better mental health study participants and those of Asian descent were ex- calculated to determine which of the groups contributed cluded from the analysis due to low subject numbers. For to the differences. LibreOffice spreadsheets version 5.3 the age category, study participants were divided into 3 age was used for all statistical tests. groups: the youngest group representing those born be- tween 1980 and 1994 (ages 23–37), the mid-aged group Results representing those born between 1965 and 1979 (ages 38– MSQLI and ethnicity-race 52), and the older group representing those born between Twenty-eight patients with MS completed the MSQLI. 1950 and 1964 (ages 53–67). Demographic and clinical MS characteristics of the pa- tients are given in Table 2. MSQLI scores on the Mental Statistical analysis Health Inventory (MHI) measures were lower in all Descriptive statistics were used to describe the sample areas for Hispanic Whites compared to Non-Hispanic and overall data. In order to analyze the MSQLI numer- African Americans. The average scores for the MHI be- ical data by ethnicity-race, EDSS scores, age and sex, a tween Non-Hispanic African Americans and Hispanic Student’s t-test was performed to compare the means Whites are shown in Table 3. Although Hispanic Whites between two groups. A two-tailed distribution and two presented lower MHI averages, only 3 MHI measures samples, unequal variance was used for the Student’s out of 5 were found to be statistically significant: MHI t-test. Results with a P-value of less than 0.05 were con- total score, MHI anxiety and behavioral control subscales. sidered significant. For the SF-36 health transition score, Non-Hispanic African Americans indicated a better total the Mann-U Whitney test was used instead due to the mental health score (84.11 vs. 69.05, P-value = 0.018), data type being of ordinal categorical data. For measures lower anxiety (89.20 vs. 63.14, P-value = 0.001) and better that had more than two groups to compare such as the behavioral control (90.50 vs. 73.57, P-value = 0.026) com- EDSS scores and age, an Analysis of Variance (ANOVA) pared to Hispanic Whites. Interestingly, Non-Hispanic was used to compare the means of the multiple groups. African Americans also demonstrated a higher SF-36 For those comparisons that showed a significant differ- Mental Component Summary Scale (MCS) score (54.48 ence (P-value ≤ 0.5), the means of each group were vs. 49.97, P-value = 0.392) compared to Hispanic Whites. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 4 of 8 Table 2 Demographic and clinical characteristics of patients Table 3 Average MHI between African Americans and Hispanic Whites Variable Value Outcome African American Hispanic White P-value Ageª, years (mean ± SD), range 41.2 ± 11.4 (21–62) MHI Total Score 84.11 69.05 0.018 Sex, n (%) MHI Anxiety 89.20 63.14 0.001 Female 18 (64.3%) MHI Depression 81.50 71.79 0.273 Male 10 (35.7%) MHI Behavioral Control 90.50 73.57 0.026 Language, n (%) MHI Positive Affect 75.50 67.86 0.267 English 22 (78.6%) Abbreviations: MHI mental health index Spanish 6 (21.4%) Higher scores indicate better mental health Race/Ethnicity, n (%) Captured in bold is P = < 0.05 White/Non-Hispanic 2 (7.1%) Although not statistically significant, Hispanic Whites White/Hispanic 14 (50.0%) scored lower in mental health even among a generic African American/Non-Hispanic 10 (35.7%) measure of mental health. Furthermore, Hispanic Whites Asian/Non-Hispanic 1 (3.6%) reported less comorbidities than Non-Hispanic African Asian/Hispanic 1 (3.6%) Americans (0.14 vs. 1.30, P-value = 0.001). All, but two Education level, n (%) Hispanic White patients reported 0 comorbidities while < High school 7 (25.0%) all, but one patient of the latter group reported at least 1 High school diploma or GED 6 (21.4%) comorbidity. The top 3 comorbidities reported were Associate’s Degree (in progress) 2 (7.1%) hypertension (high blood pressure), dyslipidemia (high cholesterol) and cardiovascular disease (heart disease) re- Associate’s Degree (completed) 2 (7.1%) spectively. Hypertension accounted for 50% of the comor- Bachelor’s Degree (in progress) 3 (10.7%) bidities reported including being the only comorbidity Bachelor’s Degree (completed) 6 (21.4%) reported by the Hispanic White group. Additionally, there Master’s Degree (in progress) 1 (3.6%) was no statistically significant difference found between Master’s Degree (completed) 1 (3.6%) the EDSS scores of Hispanic Whites and Non-Hispanic Marital Status, n (%) African Americans indicating that the statistically signifi- Single 16 (57.1%) cant differences found were independent of the severity of Married 8 (28.6%) their EDSS based disability. Hispanics with MS had an Divorced 4 (14.3%) average EDSS score of 4.21 and African Americans had an average of 4.75. Moreover, Hispanics with MS had an Employment Status average MS disease duration of 5 years compared to 5.2 Employed 11 (39.3%) years for Non-Hispanic African Americans. There were Unemployed 11 (39.3%) also no statistically significant differences found between On Disability or Supplemental Security Income 6 (21.4%) the use of illicit drugs or the use of interferon medications Current or Former Smoker 11 (39.3%) between the two groups, as interferons have been reported Current or Former Alcohol Drinker 14 (50.0%) to exacerbate depressive symptoms [15]. Of the 42% of Current or Former Illicit Drug User 12 (42.9%) Hispanic Whites and Non-Hispanic African Americans on Clinical Form of MS, n (%) interferon MS medications, 70% of those were Hispanic Relapsing-remitting 26 (92.9%) White and 30% were Non-Hispanic African American. Rebif and Betaseron were tied for the most commonly re- Secondary progressive 2 (7.1%) c ported interferon medication. There were no other statis- Disease Duration , years (mean ± SD), range 5.5 ± 4.4, (1–10) tically significant differences found in the remaining Number of Comorbidities MSQLI measures between Non-Hispanic African Ameri- 0 15 (53.6%) cans and Hispanic Whites. 1 9 (32.1%) 2 3 (10.7%) MSQLI and EDSS 3 1 (3.6%) EDSS scores were categorized into 3 groups: mild dis- EDSS score, (mean ± SD), range 4.2 ± 2.0 (1–8) ability (EDSS score ≤ 3), mild-moderate disability (EDSS score 3.5–5.5) and moderate-severe disability (EDSS Abbreviations: SD standard deviation, GED General Education Diploma, MS multiple sclerosis, EDSS expanded disability status scale score > 5.5). When comparing all the MSQLI measures ªAge when MSQLI was administered to the EDSS scores, statistically significant differences Includes academic, occupational, technical, or vocational programs Year of MS diagnosis to MSQLI administered date were only found between the mild disability group and Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 5 of 8 the moderate-severe disability group in the SF-36 Phys- statistically significant differences in the remaining ical Components Summary Scale (PCS) and SF-36 Health MSQLI mean scores. Transition (HT) score. The average scores for the SF-36 PCS and SF-36 HT between the mild and moderate-severe MSQLI and sex disability groups are shown in Table 4. Not surprisingly, There were no statistically significant differences in the patients with an EDSS ≤ 3 indicated a better physical health mean MSQLI scores between females and males. Add- score (43.56 vs. 33.21, P-value = 0.028) and a better change itionally, the average EDSS for females was 3.75 and 4.39 in health status over the last year (1.56 vs. 2.80, P-value < for males, which was also not statistically significant. 0.05) compared to those with an EDSS score of greater than 5.5. Note, that a higher physical components score corresponds with a better physical health and a lower Discussion SF-36 HT score represents a lesser change in health status In this study, we evaluated the MSQLI data of minority over the previous year. There were no statistically signifi- MS patients to identify demographic and disease charac- cant differences found in the remaining MSQLI mean teristics significantly associated with the quality of life of scores between these 3 EDSS groups. these patients residing in a large urban area. We found significant racial/ethnic differences in the HRQoL of people with MS. In this study, Hispanic White MS MSQLI and age patients reported a worse overall mental health score MS patients were divided into 3 age categories: the compared to Non-Hispanic African Americans. More youngest group representing those born between 1980 specifically, Non-Hispanic African Americans were and 1994 (ages 23–37), the mid-aged group representing found to have lesser anxiety and better behavioral those born between 1965 and 1979 (ages 38–52), and control compared to Hispanic Whites based on self- the older group representing those born between 1950 report. Hispanic Whites also reported a statistically and 1964 (ages 53–67). In terms of the age of the MS significantly lower number of comorbidities than patients, significant differences were found in the SF-36 Non-Hispanic African Americans. Several studies have Health Transition (HT), the Modified Fatigue Impact reported that physical and mental comorbidities nega- Scale (MFIS) and the Perceived Deficits Questionnaire tively affect HRQoL [16–18]. However, hypertension was (PDQ) scores. The average scores for the SF-36 HT, the only comorbidity reported by Hispanic Whites and lit- MFIS and PDQ between the 3 age groups are shown in tle is known about the relationship between hypertension Table 5. The youngest group of MS patients indicated a and HRQoL in MS patients and is often physically asymp- better change in health status over the last year compared tomatic [19]. Additionally, both groups reported similar to the oldest group (1.60 vs. 2.88, P-value = < 0.05), the averages of EDSS scores and MS disease duration. No sta- oldest group indicated a greater impact of fatigue com- tistically significant differences were found in the use of pared to the youngest and mid-aged groups (2.88 vs. 1.60 illicit drugs or interferon medications as these can impact vs. 2.22, P-value = 0.035) and the oldest group indicated a HRQoL as well. Racial and ethnic minorities in general greater perceived cognitive impairment compared to the tend to have poorer mental health, barriers to health, and mid-age group (37.33 vs. 18.22, P-value = 0.027). Addition- receive lower quality mental health care [20]. However, ally, no statistically significant differences in the EDSS despite sharing similar socio-demographic backgrounds, scores of the 3 age groups were found indicating that the MS disease duration, and disability levels, the Hispanic statistically significant differences found are independent MS patients perceived having worse psychological func- of the severity of their disability. The average EDSS score tioning. Our results suggest a health disparity in the men- for the youngest, mid and oldest age groups were 3.00, tal health of Hispanics with MS. This may be related to 4.94, and 4.67 respectively. There were also no other language barriers and/or cultural differences in health be- haviors and health attitudes. Language barriers are a major constraint in the treatment and care of Hispanics in gen- Table 4 Average SF-36 between 2 EDSS groups eral [21]. Additionally, in Hispanic culture there is a per- Outcome EDSS ≤ 3 EDSS > 5.5 EDSS > 5.5 ception that mental health services are only for people SF-36 PCS 43.56 33.21 33.21 who are severely disturbed and therefore seeking mental SF-36 HT 1.56 2.80 < 0.05 health services can be a stigma rather than a resource Abbreviations: SF-36 36-item short form generic health status questionnaire, [22, 23]. Future research is needed to analyze the EDSS Kurtzke Expanded Disability Status Scale, PCS physical components mental health of Hispanics and African Americans summary scale, HT health transition item Higher scores indicate better physical health with MS especially since the population of Hispanics SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat in the U.S with MS will increase as the total Hispanic worse, 5, much worse Captured in bold is P = < 0.05 population increases. Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 6 of 8 Table 5 Average MSQLI between 3 Age Groups Outcome Born 1980–1994 (youngest) Born 1965–1979 (middle-aged) Born 1950–1964 (oldest) P-value SF-36 HT 1.60 2.22 2.88 < 0.05 MFIS 22.60 21.44 46.00 0.035 PDQ 24.67 18.22 37.33 0.027 Abbreviations: MSQLI multiple sclerosis quality of life inventory, SF-36 36-item Short Form Generic Health Status Questionnaire, HT health transition item, MFIS modified fatigue impact scale, PDQ perceived deficits questionnaire SF-36 HT scale: 1, much better, 2, somewhat better, 3, same, 4, somewhat worse, 5, much worse Higher scores indicate greater impact of fatigue Higher scores indicate greater perceived cognitive deficits Captured in bold is P = < 0.05 We also found that MS patients with mild disability determinants and concerns of a patient’soverall health (EDSS ≤ 3) reported a better overall physical health and status from the patient’sperspective [30]. It can detect a better change in health status over the last year com- the subtle disease-specific changes in MS that the pared to those of moderate-severe disability (EDSS > 5.5). EDSS cannot [31]. The MSQLI was selected as the These expected findings validate the EDSS because the measure of HRQoL in this study because of its com- EDSS measures disability on a scale of 0–10 with higher prehensiveness and specificity to MS patients. In a side scores indicating a higher level of disability so with scores to side comparison of 3 different MS-specific HRQoL ≤ 3 one would anticipate patients with lower disability measures, the MSQLI was shown to be more compre- levels to report better physical health measures and better hensive in its coverage of the common MS symptoms changes in health status. The youngest group (ages 23–37) [14]. Additionally, the MSQLI has been shown to work of MS patients reported a better change in health status effectively in a field test with 300 North American pa- over the last year compared to the oldest group (ages 53– tients with MS and a broad range of physical impair- 67), the oldest group of MS patients reported a greater im- ment (EDSS = 0–8.5) [14]. It is continuously being pact of fatigue compared to all age groups (ages 38–67) used as an outcome measure in clinical trials [30, 32] and lastly that the oldest group of MS patients reported a and has been validated for use in older MS adults and greater perceived cognitive impairment compared to the cognitively impaired MS adults [33, 34]. Most import- mid-aged group (ages 38–52). The youngest group (ages antly, it is well documented that patients with MS have 23–37) also had the lowest average EDSS score (EDSS = 3) a poorer quality of life than the healthy population and of all age groups. Moreover, the oldest group (ages 53–67) people with other chronic diseases [6, 29, 35–37]. This was found to have the most fatigue impact. Fatigue is the study provides added insight into how MS impacts and most common physical symptom reported by MS patients affects the HRQoL of minority patients with MS living [24]. In a pilot study of Latinos with MS, fatigue was in the United States. found to have the greatest impact on daily activities [21]. However, this study has some limitations. Our sample These results can be explained by the fact that with older size was small. There may have been a loss of translation age comes more fatigue. In addition, the oldest group in the Spanish version of the MSQLI because we trans- (ages 53–67) indicated more perceived cognitive impair- lated the MSQLI into Spanish. However, others have ment compared to the mid-aged group (ages 38–52). No translated different scales with success. For example, the significant MSQLI findings were found between females quality of life in neurological disorders (Neuro-QoL) and males. According to our results, the MSQLI and measurement system is another HRQoL instrument for EDSS are independent valid measures of disability in our adults and children with neurological disorders [38]. It cohort. was originally developed in English and shortly after The EDSS may be the most common outcome meas- translated to Spanish [38]. In a paper analyzing the ure of impairment/disability used by MS specialists and Spanish version of the Neuro-QoL, Correia and col- neurologists, however it has limitations [6, 25]. For one, leagues concluded that both the adult and pediatric it is biased towards mobility [6]. Second, there are issues Spanish items were considered conceptually equivalent with inter-rater reliability in the minimal- moderate to the English source [38]. In a similar study, Fernandez range of disability [26]. Third, physical function is only and colleagues investigated the validity and reliability of one aspect of a patient’s experience [27, 28]. In a quality the Spanish version of the Multiple Sclerosis Inter- of life study of MS patients, Göksel Karatepe and col- national Quality of Life (MusiQoL) questionnaire [39]. leagues found that disability was negatively correlated They concluded the Spanish version of the MusiQoL with physical and mental health status in MS patients questionnaire was a valid and reliable instrument for [29]. The EDSS is and should be complemented by mea- measuring quality of life in patients with MS in Spain sures of HRQoL [30]. HRQoL measures reflect the key [39]. Lastly, the type of MS medication may impact Garcia et al. Multiple Sclerosis and Demyelinating Disorders (2019) 4:1 Page 7 of 8 HRQoL. For instance, a patient who has to inject their 4. Thompson AJ, Toosey AT, Ciccarelli O. Pharmacological management of symptoms in multiple sclerosis: current approaches and future directions. medication on a daily basis may differ in their HRQoL Lancet Neurol. 2010;9:1182–99. compared to a patient with oral treatment. The study 5. Lublin FD, Reingold SC. Defining the clinical course of multiple sclerosis: was not powered for this comparison. results of an international survey. National Multiple Sclerosis Society (USA) advisory committee on clinical trials of new agents in multiple sclerosis. Neurology. 1996;46:907–11. Conclusions 6. Nortvedt MW, Riise T, Myhr KM, et al. Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology. 1999;53:1098–103. This study uniquely compared the quality of life analysis 7. Buchanan RJ, Huang C, Chakravorty BJ. Health-related quality of life among of two ethnic populations, African Americans and His- African Americans with multiple sclerosis. Ethn Dis. 2011;1:337–84. panics with MS at a large urban safety net hospital. Our 8. Compston A. The genetic epidemiology of multiple sclerosis. Philos Trans R Soc Lond Ser B Biol Sci. 1999;354:1623–34. study highlights the importance of the evaluation of 9. Kurtzke JF, Beebe GW, Norman JE Jr. Epidemiology of multiple sclerosis in U.S. quality of life in minority MS patients and the need for veterans: 1. Race, sex, and geographic distribution. Neurology. 1979;29:1228–35. future research to investigate the mental health disparity 10. Khan O, Williams MJ, Amezcua L, et al. Multiple sclerosis in US minority populations: clinical practice insights. Neurol Clin Pract. 2015;5:132–42. “of and between” minorities with MS. Overall, physicians 11. U.S. Census Bureau (2016). Population estimates of the United States, July 1, treating minority patients with MS should understand 2016 Retrieved from https://www.census.gov/quickfacts/fact/table/US/ how MS symptoms affect different ethno-racial groups PST045216 in order to provide culturally competent care to improve 12. U.S. Census Bureau (2014). National Population Projections, Table 10 Retrieved from https://www.census.gov/data/tables/2014/demo/popproj/ their quality of life. 2014-summary-tables.html 13. Ritvo PG, Fischer JS, Miller DM, et al. Multiple sclerosis quality of life Acknowledgements inventory: a user’s manual. National Multiple Sclerosis Society. 1997. https:// The authors would like to thank the Conrad N. Hilton Foundation for grant www.nationalmssociety.org/For-Professionals/Researchers/Resources-for- funding associated with the project. All the authors have no other relevant Researchers/Clinical-Study-Measures/Multiple-Sclerosis-Quality-of-Life- disclosures. Inventory-(MSQL 14. Fischer JS, LaRocca NG, Miller DM, et al. Recent developments in the Funding assessment of quality of life in multiple sclerosis. Mult Scler. 1999;5:251–9. Was provided by the Conrad N. Hilton Foundation. 15. De Jong HJI, Kingwell E, Shirani A, et al. Evaluating the safety of β- interferons in MS: a series of nested case-control studies. Neurology. 2017; 88(24):2310–20. Availability of data and materials 16. Turpin KV, Carroll LJ, Cassidy JD, et al. Deterioration in the health-related Data from the study will remain available for minimum of 3–10 years. quality of life of persons with multiple sclerosis: the possible warning signs. Mult Scler. 2007;13:1038–45. Authors’ contributions 17. Warren S, Turpin KV, Warren KG. Health-related quality of life in MS: issues DG writing manuscript, research design, data collection, JL database and interventions. Can J Neurol Sci. 2009;36:540–1. maintenance, data collection, data review, manuscript review, KB database 18. 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Journal

Multiple Sclerosis and Demyelinating DisordersSpringer Journals

Published: Jan 17, 2019

References