Disparities by Race in Pregnancy Care and Clinical Outcomes in Women With Multiple Sclerosis: A Diverse Multicenter Cohort

BACKGROUND AND OBJECTIVES: Racial disparities exist in both neurologic and obstetric populations, underscoring the importance of evaluating pregnancy outcomes in diverse women with multiple sclerosis (MS). The objective of this multicenter retrospective study was to compare pregnancy care and outcomes between Black and Hispanic (underrepresented) and White women with MS. METHODS: Demographic and clinical data were extracted from medical records of 9 US MS centers for women with MS/clinically isolated syndrome who delivered live births between 2010 and 2021. Sites identified at last 15 consecutive Black/Hispanic women and a matching number of White women. Socioeconomic factors, pregnancy, and MS care/outcomes were compared between groups (underrepresented and White and then Black and Hispanic) using Wilcoxon rank sum (U statistic and effect size r reported), χ2, t tests and logistic regressions as appropriate to data type. Multiple imputation by chained equation was used to account for missing data. RESULTS: Overall, 294 pregnancies resulting in live births were analyzed ( 81 Black, 67 Hispanic, and 146 White mothers). Relative to underrepresented women, White women lived in areas of higher median (interquartile range [IQR]) Child Opportunity Index (79 [45.8] vs 22 [45.8], U = 3,824, r = 0.56, p < 0.0001) and were more often employed (84.9% vs 75%, odds ratio [OR] 2.57, CI 1.46-4.50, p = 0.0008) and privately insured (93.8% vs 56.8%, OR 11.6, CI 5.5-24.5, p < 0.0001) and more received a 14-week ultrasound (98.6% vs 93.9%, OR 4.66, CI 0.99-21.96, p = 0.027). Mode of delivery was significantly different between the three groups (X2(10,294) = 20.38, p = 0.03); notably, Black women had the highest rates of emergency cesarean deliveries, and Hispanic women highest rates of uncomplicated vaginal deliveries. Babies born to underrepresented women had lower median (IQR) birthweights than babies born to White women (3,198 g [435.3 g] vs 3,275 g [412.5 g], U = 9,255, r = 0.12, p = 0.04) and shorter median (IQR) breastfeeding duration (4.5 [3.3] vs 6.0 [4.2] months, U = 8,184, r = 0.21, p = 0.003). While underrepresented women were younger than White women (mean [SD] 30.9 [4.8] vs 33.8 [4.0], t = 1.97, CI 1.96-3.98, p < 0.0001), their median (Q1-Q3, IQR) Expanded Disability Status Scale was higher (1.5 [1-2.5, 1.5] vs 1 [0-1.5, 1.5], U = 7,260, r = 0.29, p < 0.0001) before pregnancy. Finally, medical records were missing more key data for Black women (19.7% missing vs 8.9% missing, OR 2.54, CI 1.25-5.06, p = 0.008). DISCUSSION: In this geographically diverse multicenter cohort, underrepresented women entered pregnancy with higher disability and fewer health care resources. Pregnancy represents a pivotal window where structural factors affect maternal and fetal health and neurologic trajectories; it is a critical period to optimize care and health outcomes.

Impact of a Virtual Wellness Program on Quality of Life Measures for Patients Living With Multiple Sclerosis During the COVID-19 Pandemic.

BACKGROUND: Patients with multiple sclerosis (MS) were vulnerable to the effects of physical inactivity during the COVID-19 pandemic. As patients returned to in-person visits, providers reported seeing increased weakness, balance issues, falls, worsening pain, and spasticity. Social isolation also contributed to increased stress, depression, and anxiety. This study explored whether attending virtual wellness programs was associated with improvements in standard quality of life questionnaire scores for patients with MS. METHODS: The purposive convenience sample consisted of 43 patients in the treatment group and 28 in the control group. Patients in the treatment group attended 2 monthly programs for 6 months and completed a demographic questionnaire, the 36-Item Short Form Health Survey (SF-36), the Modified Fatigue Impact Scale, and the Medical Outcomes Study Pain Effects Scale (PES). Patients requested additional topics, resulting in 5 additional programs. The control group consisted of patients who chose not to attend the programs but agreed to complete the questionnaires. RESULTS: In comparing questionnaire responses (6 months minus baseline) among the participants in the treatment group, an association was found between higher meeting attendance and improvements in emotional well-being (P = .038), pain on the PES (P = .011), mindfulness on the SF-36 pain scale (P = .0472), and exercise on the PES (P = .0115). CONCLUSIONS: The results of this study suggest that a virtual wellness program may provide beneficial emotional support, physical exercise, and health promotion activities resulting in improved quality of life in people with MS. In addition, mindfulness and exercise programs may be beneficial in pain management.

Peripartum disease activity in moderately and severely disabled women with multiple sclerosis.

Background: The effects of pregnancy on multiple sclerosis (MS) inflammatory activity are not well described in women with moderate to severe disabilities. Objective: To quantify the peripartum annualized relapse rate (ARR) in women with MS with an Expanded Disability Status Scale (EDSS) ≥ 3. Methods: We performed a retrospective cohort study of 85 pregnancies in 74 subjects with preconception EDSS ≥ 3. We quantified peripartum ARR and tested for risk factors predictive of peripartum relapses, postpartum brain magnetic resonance imaging activity (new T2 or gadolinium-enhancing lesions), and disability worsening. Results: There were 74 live births, with a 56% operative delivery rate. In subjects with relapsing-remitting MS, ARR decreased to 0.11 during the third trimester of pregnancy compared to 0.59 in the year preconception and increased to 1.22 in the 3 months postpartum. Women with a higher preconception EDSS had higher odds of postpartum relapses and clinically significant worsening of disability as compared to subjects with a lower EDSS. Conclusions: Moderately to severely disabled women with MS have a lower risk of relapse during pregnancy as compared to preconception, followed by a marked increase postpartum. Further studies are needed to identify ways to reduce peripartum inflammatory activity and disability progression in women with MS with moderate to severe disability.

Support Group Participation: Effect on Perceptions of Patients with Newly Diagnosed Multiple Sclerosis.

BACKGROUND: Patients newly diagnosed as having multiple sclerosis (MS) face an overwhelming number of questions about how it will affect their lives. Participation in a support group is one way to obtain information and receive support from others. However, existing support groups are often attended by patients with significant disability, resulting in newly diagnosed patients being hesitant to return. METHODS: This qualitative pilot study explored perceptions of patients with newly diagnosed MS before and after participation in two monthly meetings. A support group was conducted each month using nursing staff, a physician, and a social worker. Prior to the first meeting, participants were asked to complete a questionnaire with open-ended questions to share their thoughts about how MS may affect their lives. After the two meetings, they were asked to complete the same questionnaire again. RESULTS: Eight themes were identified: uncertain disease course; insecure future; physical, emotional, and cognitive impacts; effect on relationships with family and/or spouse/significant other; ability to develop future relationship with significant other; impact on career plans; impact on ability to achieve future goals; and impact on ability to care for self and family. Five of six participants who attended both meetings and one of four who attended only the first meeting expressed a change in their perception of how MS may affect their lives. CONCLUSIONS: A support group dedicated exclusively to newly diagnosed patients may provide an opportunity for patients to experience a change in perceptions of MS.

Perspectives of women with disabilities on reaching those who are hard to reach.

Healthcare needs of women with disabilities are often neglected, even for women who are well connected to the community and to the healthcare system. So-called "hard-to-reach" women, whose degree of disability impedes use of community resources, have even greater difficulty obtaining health care. The purpose of this study was to gain insight into the perceptions of women with mobility and sensory limitations about several healthcare issues that may affect them: barriers to obtaining care, sources of information about health issues, ways to improve access to care, and ways to help hard-to-reach women overcome barriers to health care and health information. Researchers conducted six focus groups, comprising 43 women with limitations of mobility, hearing, or vision. To validate the women's input, researchers conducted two additional focus groups: the first comprised female physicians with special interest in the health care of women with disabilities, and the second included professional administrative staff of agencies that provide services for people with disabilities. In several cases, members of the physician and agency focus groups were themselves women with disabilities. In addition, 16 women with disabilities participated in an online survey; their responses were used to validate the findings of the face-to-face focus groups. Transcribed data were content analyzed and 10 themes identified. Seven of those themes are discussed in this article: communication barriers; lack of knowledge and awareness among healthcare providers; access issues; working the system; system issues; outreach to healthcare providers; and reaching hard-to-reach women. The findings of this study can provide direction to development of more effective outreach to hard-to-reach women with disabilities, resulting in better integration of healthcare services for this population.

Integration of disability-related content in nursing curricula.

Despite evidence that health care professionals, including nurses, do not perceive persons with disabilities in a positive light and fail to attend to their health care needs, it is not known how nursing programs address the topic of disability. This descriptive study was conducted to examine the extent to which schools of nursing in the United States address disability-related issues and the strategies used to integrate disability-related content in their curricula. A 27-item investigator-developed survey was sent to a national stratified random sample of 1,000 schools of nursing. Questions pertained to curricular content, specific groups of persons with disabilities, and teaching methods and resources used to teach nursing students about disability. Respondents indicated that they included some content related to disability in their curricula. Nursing textbooks were the most common source of information used. Barriers to including disability-related content were lack of time and lack of faculty interest or expertise. These findings can serve as a stimulus to increase the extent and breadth of disability-related issues in nursing curricula.

Health promotion interests of women with disabilities.

The number of women with disabilities (WWD) in the United States is substantial and growing. Health promotion education can play a key role in the achievement of optimal health and well-being for this population. A preliminary step in planning educational programs is to identify health promotion topics of interest to this target population. This study surveyed WWD about their interest in health promotion topics and compared their interests by demographic characteristics (i.e., age, employment status, ethnic group, type of disabling condition, and level of disability). The sample population, comprising 604 women with a variety of disabilities, completed a written or online survey. Topic of interest selected were tallied and ranked by order of interest. Topics ranking highest in interest and selected by at least half of the WWD were aging with a disability, stress management, exercise, nutrition, overview of health promotion, and maintaining mental health. Significant health issues not identified included smoking cessation, pregnancy, and osteoporosis. If healthcare providers are aware of the topics that interest WWD, they can better develop educational programs to meet the needs of this vulnerable population.

Usefulness of the SCORE index as a predictor of osteoporosis in women with disabilities.

BACKGROUND: Osteoporosis is widely recognized as a common health problem among older women. It has also recently been identified as common in both pre- and postmenopausal women with disabilities. Although several clinical indices have been developed to identify nondisabled women likely to have low bone mineral density (BMD) when tested, studies that have tested the usefulness of these clinical indices have excluded women with disabilities. Thus, the usefulness of these indices in predicting low BMD and osteoporosis in women with disabilities is unknown. PURPOSE: This study examined the ability of one of these indices, the Simple Calculated Osteoporosis Risk Estimation (SCORE), to identify women with disabilities likely to have low BMD on screening. SAMPLE/DATA COLLECTION: Women with disabilities (N = 307) responded to the six-item SCORE index and underwent peripheral BMD screening. The sensitivity, specificity, and accuracy of the SCORE index in predicting BMD with the criterion of a T-score of

Accessible online health promotion information for persons with disabilities.

Online health promotion materials have great potential to reach persons with disabilities and provide valuable information to this vulnerable population. While health promotion efforts are important for everyone, they are crucial for individuals with disabilities. Yet information needed to support these efforts is often presented in such a way that its access is limited or its content is inappropriate for this population. Whether designing or selecting online materials for individuals with disabilities, nurses can benefit from knowledge about strategies to make web sites more accessible or to assess the accessibility of existing web sites. The task of providing health promotion information to women with disabilities was undertaken as part of the "Health Promotion for Women with Disabilities Project" at Villanova University's College of Nursing. A web site was created as one method of providing information. This paper presents strategies that are used to make this site accessible.

Healthcare experiences of women with visual impairment.

PURPOSE: This investigation was a secondary analysis of focus group transcripts to address the question of how women with low vision or blindness have experienced healthcare. DESIGN: Secondary analysis of qualitative data was performed on transcripts from 2 focus groups. SETTING: These focus groups were conducted at an agency serving visually impaired people in Philadelphia. SAMPLE: The 2 focus groups included 7 and 11 women, respectively, having low-vision or who are blind who had been part of an original study of reaching hard-to-reach women with disabilities. METHODS: Content analysis for the identification of thematic clusters was performed on transcriptions of the focus group data. FINDINGS: Findings are consistent with existing research on the health needs of women with disabilities but add specific understanding related to visual impairment. Six thematic categories were identified: health professionals' awareness, information access, healthcare access, isolation, the need for self-advocacy, and perception by others. CONCLUSIONS AND IMPLICATIONS: Secondary analysis of qualitative data affords in-depth understanding of a particular subset of participants within a larger study. Clinical nurse specialists and other health professionals need to increase their sensitivity to the challenges faced by women with visual impairment, and plan and provide care accordingly. Health professions students need to be prepared to interact with people who are visually impaired and healthcare settings need to respond to their needs.

The treatment of multiple sclerosis with inosine.

OBJECTIVE: The objective of this study is to evaluate the safety and tolerability of inosine in patients with relapsing-remitting multiple sclerosis (RRMS). The secondary objectives are to assess the effects of inosine administration on serum urate (UA) levels, the progression of neurologic disability, the cumulative number of new, active lesions on magnetic resonance imaging (MRI), and changes in serum levels for markers of inflammation. DESIGN: Oral administration of inosine was used to raise serum levels of the natural peroxynitrite scavenger UA in 16 patients with RRMS during a 1-year randomized, double-blind trial. OUTCOME MEASURES: The endpoints studied were relapse rate, disability assessed by the Kurtzke Expanded Disability Status Scale (EDSS), MRI, and analysis of serum levels of nitrotyrosine, and oxidative and pro-inflammatory makers. RESULTS: Increased serum UA levels correlated with a significant decrease in the number of gadolinium-enhanced lesions and improved EDSS. A number of MRI intensity-based parameters were altered by inosine treatment, in certain cases correlating with changes in serum UA levels. In a patient with low serum UA and high lesion activity, raising UA levels by inosine treatment decreased serum nitrotyrosine while increasing the ratio of Th2 to Th1 cytokines in circulating cells. The only side-effect correlated with inosine treatment was kidney stone formation in 4/16 subjects. CONCLUSIONS: These data suggest that the use of inosine to raise serum UA levels may have benefits for at least some MS patients. The effect of this treatment is likely to be a consequence of inactivation of peroxynitrite-dependent free radicals. Close monitoring of serum UA levels as well as other measures are required to avoid the potential development of kidney stones.

Osteoporosis risk and low bone mineral density in women with physical disabilities.

OBJECTIVES: To describe the results of bone mineral density (BMD) screening in women with different physical disabilities and to identify their risk factors for osteoporosis and use of strategies to prevent osteoporosis. DESIGN: A cross-sectional descriptive study. SETTING: Community. PARTICIPANTS: Convenience sample of 429 community-residing women with different disabilities. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Peripheral BMD screening of the os calcis, using dual-energy x-ray absorptiometry. A self-administered survey addressed osteoporosis risk factors, use of osteoporosis prevention strategies, and previous recommendations for BMD screening or testing. RESULTS: Based on World Health Organization criteria, 30.5% and 22.6% of the total sample had BMD values indicative of osteopenia and osteoporosis, respectively. The number of self-reported osteoporosis risk factors ranged from 0 to 10 (mean, 4.5+/-1.7). Subjects reported using few strategies to reduce their osteoporosis risks. One quarter of the women reported previous BMD screening or testing; about one third reported receiving recommendations for testing or screening by a health care provider. CONCLUSIONS: More than half of the sample had low BMD, and it was present in premenopausal as well as menopausal women. Despite low BMD and the presence of osteoporosis risk factors, less than a third of the women previously had BMD testing or screening or recommendations for such testing. Because low BMD is common in women with disabilities, greater attention must be directed toward their risk for osteoporosis and osteoporotic fractures. Prevention strategies to reduce osteoporosis risk should be considered, although their efficacy is not yet known in populations with disabilities.