Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index—Mark III (HUI3) in persons with MS. Methods: In 2018, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry completed the RAND-12 and the HUI3 to assess HRQOL. We used item-response theory (IRT) and equipercentile linking approaches to develop a crosswalk between instruments. We compared predicted scores for the HUI3 from each crosswalk to observed scores using Pearson correlations, intraclass correlation coefficients (ICCs), and Bland–Altman plots. Results: Of 11,389 invited participants, 7129 (62.6%) responded. Predicted and observed values of the HUI3 from the IRT-linking method were moderately correlated (Pearson r = 0.76) with good concordance (ICC = 0.72). However, the Bland–Altman plots suggested biased prediction. Predicted and observed values from the equipercentile linking method were also moderately correlated (Pearson r = 0.78, ICC = 0.78). The Bland–Altman plots suggested no bias. Conclusion: We developed a crosswalk between the RAND-12 and the HUI3 in the MS population which will facilitate data harmonization efforts.
Objective: Identify racial/ethnic differencesamong people with multiple sclerosis (MS) indemographics, MS disease characteristics, andhealth services received.Participants: We analyzed enrollment datafrom the Registry of the North AmericanResearch Committee on Multiple Sclerosis(NARCOMS) Project to compare 26,967 Cau-casians, 715 Latinos, and 1,313 AfricanAmericans with MS.Design: Racial/ethnic analyses of NARCOMSdata focused on descriptive characteristics,using ANOVA and chi-square tests to identifysignificant differences in means and frequen-cies among Caucasians, Latinos, and AfricanAmericans.Results: We identified significant racial/ethnicdifferences in demographics, MS disease char-acteristics, and treatments. Caucasians wereolderwhenfirstMSsymptomswereexperienced(30.1 years) and at MS diagnosis (37.4 years)than Latinos (28.6 years and 34.5 years) orAfrican Americans (29.8 years and 35.8 years).Larger proportions of Latinos reported normalfunctionformobilityandbladder/bowelfunctioncompared to Caucasians. Larger proportions ofLatinos (44.2 percent) and African Americans(45.8 percent) reported at least mild depressioncompared to only 38.7 percent of Caucasians.Larger proportions of Latinos never receivedmental health care or care from rehabilitationspecialists thanCaucasiansor African Americans.A larger proportion of African Americans hadnever been treated by a neurologist specializingin MS and a smaller proportion of AfricanAmericans received care at a MS clinic thanCaucasians or Latinos.Conclusions: Our findings highlight the needfor future analyses to determine if age, diseaseduration, MS symptoms, and disability levelsprovide additional insights into racial/ethicdifferences in the use of MS-related providers.(Ethn Dis. 2010;20:451–457)Key Words: Multiple Sclerosis, AfricanAmericans, Latinos, Demographics, Symptoms,Treatments
Comorbidity is common in the general population and is associated with adverse health outcomes. In multiple sclerosis (MS), it is unknown whether preexisting comorbidity affects the delay between initial symptom onset and diagnosis ("diagnostic delay") or the severity of disability at MS diagnosis.Using the North American Research Committee on Multiple Sclerosis Registry, we assessed the association between comorbidity and both the diagnostic delay and severity of disability at diagnosis. In 2006, we queried participants regarding physical and mental comorbidities, including date of diagnosis, smoking status, current height, and past and present weight. Using multivariate Cox regression, we compared the diagnostic delay between participants with and without comorbidity at diagnosis. We classified participants enrolled within 2 years of diagnosis (n = 2,375) as having mild, moderate, or severe disability using Patient Determined Disease Steps, and assessed the association of disability with comorbidity using polytomous logistic regression.The study included 8,983 participants. After multivariable adjustment for demographic and clinical characteristics, the diagnostic delay increased if obesity, smoking, or physical or mental comorbidities were present. Among participants enrolled within 2 years of diagnosis, the adjusted odds of moderate as compared to mild disability at diagnosis increased in participants with vascular comorbidity (odds ratio [OR] 1.51, 95% CI 1.12-2.05) or obesity (OR 1.38, 95% CI 1.02-1.87). The odds of severe as compared with mild disability increased with musculoskeletal (OR 1.81, 95% CI 1.25-2.63) or mental (OR 1.62, 95% CI 1.23-2.14) comorbidity.Both diagnostic delay and disability at diagnosis are influenced by comorbidity. The mechanisms underlying these associations deserve further investigation.
Osteoporosis is an important risk factor for fragility fractures. Although osteoporosis is considered common in multiple sclerosis (MS), few previous studies focused on fractures in MS.Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we investigated the frequency of osteoporosis, fractures, and clinical risk factors for fracture in MS.In 2007, 9,346 NARCOMS participants reported fractures and clinical risk factors for fractures including history of osteoporosis or osteopenia (low bone mass), sedentary level of physical activity, falls in the last year, current smoking status, family history of osteoporosis, and impaired mobility.Among responders, 2,501 (27.2%) reported low bone mass. More than 15% of responders reported a history of fracture after age 13 years (n = 1,482). Among those reporting fractures, 685 (46.2%) reported multiple fractures, while 522 (35.2%) reported a wrist fracture, 165 (11.1%) reported a vertebral fracture, and 100 (7.4%) reported a hip fracture. Excluding age, 1,413 (15.1%) participants had 1 clinical risk factor for fracture, 2,341 (25.0%) had 2, and 5,393 (57.7%) had 3 or more. Among participants with a history of fracture, 746 (55%) reported taking calcium supplements, 858 (68.8%) reported taking vitamin D supplements or a multivitamin with vitamin D, and 334 (22.5%) reported taking a bisphosphonate.Patients with multiple sclerosis (MS) often have multiple risk factors for osteoporotic fractures. Many patients with MS with low bone mass or previous fractures are not taking supplemental calcium or vitamin D, suggesting a potential area of improvement in care.
Previous work suggested that veterans with multiple sclerosis (MS) treated through the Veterans Health Administration (VHA) had greater access to multidisciplinary care than veterans treated elsewhere. It is unknown whether other VHA-related differences in processes of MS care exist. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we aimed to compare bladder management reported by veterans who receive care through the VHA (VHA veterans) and those who do not (non-VHA veterans). In 2005, NARCOMS participants completed the Urogenital Distress Inventory–6 (UDI-6) and reported urologic investigations and treatments. Using multivariable logistic regression, we assessed the independent association of VHA care with investigations or treatments. A total of 1247 veterans with MS responded to the questionnaire, of whom 1230 (98.6%) reported where they received their health care. Of these, 583 (47.4%) received some or all of their care through the VHA. After adjustment for demographic and clinical factors, VHA veterans more frequently reported undergoing urologic investigations than non-VHA veterans (adjusted odds ratio, 2.02; 95% confidence interval, 1.55–2.61). VHA veterans more frequently reported using pharmacologic and nonpharmacologic interventions than non-VHA veterans. Differences exist in the processes of MS bladder care between the VHA and elsewhere; this variation suggests the availability of opportunities to optimize such care.
In this study the authors present results from a survey of 99 Latinos with multiple sclerosis (MS), including demographic, disease, and mental health characteristics. Four in 10 respondents reported depressive symptoms; half thought they had more worries than other people due to their MS; and about 29 % thought they needed mental health care in the past year. Whereas 76 % of respondents were highly satisfied with their access to MS-focused care, only 61% were highly satisfied with their access to mental health care. These findings highlight the role of mental health and social services in the comprehensive care needed by Latinos with MS.
Aims: To better understand the impact of the clinical course of multiple sclerosis (MS) and disability on employment, absenteeism, and related factors.Materials and methods: This study included respondents to the North American Research Committee on Multiple Sclerosis Registry spring 2015 update survey who were US or Canadian residents, aged 18–65 years and reported having relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), or primary progressive MS (PPMS). The RRMS and SPMS participants were combined to form the relapsing-onset MS (RMS) group and compared with the PPMS group regarding employment status, absenteeism, and disability. Multivariable logistic regression was used to examine the relationship between employment-related outcomes and factors that may affect these relationships.Results: Of the 8004 survey respondents, 5887 (73.6%) were 18–65 years of age. The PPMS group (n = 344) had a higher proportion of males and older mean age at the time of the survey and at time of diagnosis than the RMS group (n = 4829). Female sex, age, age at diagnosis, cognitive and hand function impairment, fatigue, higher disability levels, ≥3 comorbidities, and a diagnosis of PPMS were associated with not working. After adjustment for disability, the employed PPMS sub-group reported similar levels of absenteeism to the employed RMS sub-group.Limitations: Limitations of the study include self-report of information and the possibility that participants may not fully represent the working-age MS population.Conclusions: In MS, employment status and absenteeism are negatively affected by disability, cognitive impairment, and fatigue. These findings underscore the need for therapies that prevent disability progression and other symptoms that negatively affect productivity in persons with MS to enable them to persist in the workforce.
To evaluate the association between health insurance coverage and disease-modifying therapy (DMT) use for multiple sclerosis (MS).In 2014, we surveyed participants in the North American Research Committee on MS registry regarding health insurance coverage. We investigated associations between negative insurance change and (1) the type of insurance, (2) DMT use, (3) use of free/discounted drug programs, and (4) insurance challenges using multivariable logistic regressions.Of 6,662 respondents included in the analysis, 6,562 (98.5%) had health insurance, but 1,472 (22.1%) reported negative insurance change compared with 12 months earlier. Respondents with private insurance were more likely to report negative insurance change than any other insurance. Among respondents not taking DMTs, 6.1% cited insurance/financial concerns as the sole reason. Of respondents taking DMTs, 24.7% partially or completely relied on support from free/discounted drug programs. Of respondents obtaining DMTs through insurance, 3.3% experienced initial insurance denial of DMT use, 2.3% encountered insurance denial of DMT switches, and 1.6% skipped or split doses because of increased copay. For respondents with relapsing-remitting MS, negative insurance change increased their odds of not taking DMTs (odds ratio [OR] 1.50; 1.16-1.93), using free/discounted drug programs for DMTs (OR 1.89; 1.40-2.57), and encountering insurance challenges (OR 2.48; 1.64-3.76).Insurance coverage affects DMT use for persons with MS, and use of free/discounted drug programs is substantial and makes economic analysis that ignores these supplements potentially inaccurate. The rising costs of drugs and changing insurance coverage adversely affect access to treatment for persons with MS.
