International journal of MS care最新文献

Background: Until the World Health Organization declared an end to COVID-19 as a global health emergency worldwide in 2023, people with multiple sclerosis (MS) were hesitant to get the COVID-19 vaccine. This study aimed to assess the final vaccination status, attitude, and adverse events related to the COVID-19 vaccine among people with MS in Egypt.

Methods: A self-administered survey was offered to people with MS who came to the Alexandria University MS Clinic in Egypt between June 2023 and November 2023.

Results: Of 150 surveys completed, 77% of participants were women. Their median age was 35.5 years (range, 19-59 years); their median disease duration was 4 years. Only 81 (54%) participants received a COVID-19 vaccine. Of that 81, 81.5% received 2 doses. The median fear of COVID-19 score (FCV-19S) was 11, and 15.3% had high levels of fear. Worrying about the worsening effect of the vaccine on MS (69.3%) and about the long-term adverse events (AEs) of the vaccines (63.3%) were the most common causes of fear. The only factor that was significantly related to receiving the vaccine was the FCV-19S score (P = .049). Among those who received the vaccine, fatigue was the most common AE reported in 48%; 5% had a neurological relapse. No other serious AEs occurred.

Conclusions: In this study, almost half of study participants with MS did not receive a COVID-19 vaccination, mainly due to fear. AEs attributed to the vaccine were mild. Implementing educational programs during future pandemics will be necessary to improve the vaccination rates of people with MS.

Background: People with multiple sclerosis (MS) often experience psychiatric symptoms, such as anxiety and depression, that impact disease progression and quality of life. Cognitive impairment, particularly in processing speed and episodic memory, is common in MS. There are several studies studying the relationship between anxiety and cognition in the population with MS. This study reviews that literature.

Methods: This bibliographic review covers publications in Spanish and English from January 2006 to June 2022. It focuses on quantitative investigations of the relationship between anxiety symptoms and cognitive variables in people with MS.

Results: A majority of studies found an association between anxiety and cognition in people with MS. Anxiety significantly affects information processing speed, learning, memory, attention, working memory, and verbal fluency in people with MS. However, some studies find no association. The impact of depressive symptoms and the bidirectional relationship between anxiety and cognition are highlighted.

Conclusions: Anxiety in people with MS is associated with cognitive impairment. Further research is needed to understand the mechanisms and establish causal relationships between anxiety and cognition in this population.

Background: Many individuals with multiple sclerosis (MS) have difficulty walking, which may prompt a physical therapy (PT) referral. Psychosocial factors, including mood, pain, and social support, may affect patients' participation and overall success in meeting PT goals; however, this has yet to be examined in MS. This study aimed to explore the associations between walking-related PT goal attainment and psychosocial factors.

Methods: Participants (N = 41) were individuals with MS from a larger study who engaged in PT per usual care during a 2-year study window. They had at least 1 walking-related goal in their PT plan of care, which could be based on subjective (eg, Multiple Sclerosis Walking Scale-12) or objective measurement (eg, 6-Minute Walk Test). Examined psychosocial factors included impact of pain and fatigue, depression and anxiety symptom severity, and social support. Group differences were examined using bivariate analyses.

Results: Participants who met all their walking-related PT goals had lower levels of pain impact (14.15 ± 5.22 vs 19.14 ± 5.29; P = .004; d = 0.95) and symptoms of depression (5.45 ± 3.53 vs 7.71 ± 3.51; P = .046; d = 0.64) and greater social support (median: 14.00 vs 12.00; P = .019 d = 0.79).

Conclusions: These findings highlight the potential links between psychosocial factors and the attainment of walking-related goals by individuals who have MS. Further evaluation into psychosocial impact on PT plans of care is needed to help guide targeted assessment and intervention approaches.

Background: Contributing to the total economic burden of multiple sclerosis (MS) in the United States, the estimated direct medical costs of MS in 2019 were $63.3 billion, with medications accounting for over half of these expenses.¹ MS disease-modifying therapy (DMT) costs can limit access, causing patients not to adhere to the medication regimen, which may lead to relapse, progression, disability, hospitalizations, and increased health care costs. Integrated health system specialty pharmacies (HSSPs) provide assistance to patients to alleviate the financial burden of specialty medications. MS center medication access specialists (MAS) obtain assistance for DMTs. This study quantifies the financial assistance obtained for patients with MS receiving medications through an integrated HSSP or infusion center.

Methods: This single-center retrospective chart review evaluated claims data for University of Rochester MS Center patients receiving financial assistance for MS specialty medications dispensed through the HSSP or infused at the MS center between July 20, 2020, and July 20, 2022. Descriptive statistics were used to assess all outcomes data.

Results: Patients received $3,377,172.96 in financial assistance. The median financial assistance used per patient per day of medication coverage was $2.08 (IQR, 12.02). The median out-of-pocket cost per patient per day after financial assistance was $0 (IQR, 0). Manufacturers provided the most financial support with a total contribution of $2,404,883.31, followed by grant foundations, which provided $574,659.27. Internal facility funds and the New York State Elderly Pharmaceutical Insurance Coverage program provided $241,377.97 and $156,252.41, respectively.

Conclusions: Patients at this MS center were able to save thousands of dollars in out-of-pocket costs using financial assistance. Integrated HSSPs and MAS teams can help reduce the out-of-pocket cost of MS specialty medications, which may improve access to these medications.

Rural regions face significant health care disparities, including decreased access to insurance, increased access barriers to specialty care, worse medical outcomes, and increased mortality rates. People with multiple sclerosis (MS) residing in rural regions in the United States, as well as globally, face similar barriers to accessing MS care and experience poorer disease outcomes. Barriers to health care access include cultural and financial constraints, scarcity of services, a lack of trained physicians, insufficient public transport, and poor availability of broadband internet service. The Appalachian region, which contains a high degree of rurality, experiences increased disparities compared with the rest of the nation and can be used to highlight the unique challenges rural populations face. Appalachian residents can identify as private, and mistrust is a major factor in providing health care. Increasing the quantity and retention of Appalachian providers is essential to building trust. Still, it has proved difficult due to issues with compensation, taxes, malpractice fees, adverse actions against physicians, and high turnover rates. Telehealth interventions such as Project ECHO (Extension for Community Healthcare Outcomes) have improved rural outcomes in multiple diseases, including MS, but limited technology and technological literacy in rural areas impede the implementation of these interventions. Given the increasing rural population and ongoing disparities these communities face, there is a need to develop targeted interventions to improve access and outcomes in rural populations.

Background: Physical activity guidelines for multiple sclerosis (MS) were first published in 2013. Physical activity is safe and beneficial in MS, yet it is unclear if physical activity levels are changing in real-world settings.

Methods: The primary objective of this study is to determine if the physical activity levels of people with MS are changing. Between September 1, 2014, and February 22, 2022, when people first accessed a provincial MS drugs program in Saskatchewan, Canada, they were invited to complete the Godin Leisure-Time Exercise Questionnaire by mail. Scatter plots of total physical activity (TPA) and health contribution (HC) scores were generated from each person's questionnaire. Multivariable linear regression explored associations and interactions between disease-modifying treatment (DMT), sex, age, age at MS onset, and disease duration on physical activity level.

Results: The response rate was 50.8% (505 responses from 993 requests). Of the respondents, 69.7% were female; the mean age was 42.8 (± 11.5) years; median MS disease duration was 6.0 years (IQR, 2.0-14.0); and 47.4% had prior DMT exposure. There was no significant change in physical activity levels of new registrants over 7 years (regression slopes TPA: 0.71, P = .26; HC: 0.61, P = .21). Men reported higher physical activity levels than women (TPA: β = 11.95; P < .001; HC: β = 6.65; P < .001). There were interactions between age and disease duration on activity scores (TPA: β = 0.03; P = .003; HC: β = 0.03; P < .001). DMT exposure was not associated with physical activity.

Conclusions: Physical activity levels of people with MS remained suboptimal for health benefits over a 7-year period. Future research should include how to use physical activity guidelines to impact real-world activity levels.

Background: We sought to examine a potential neural mechanism of reduced depressive symptoms in response to aerobic treadmill walking exercise training in people with multiple sclerosis (MS). This includes a secondary analysis of depressive symptom and MRI data from an original randomized controlled trial (RCT) on exercise effects on learning and memory impairment in people with MS.

Methods: Ten fully ambulatory people with MS were randomly assigned into either a 12-week aerobic treadmill walking condition or active control condition (ie, stretching and range-of-motion activities). All participants completed the Hospital Anxiety and Depression Scale for measurement of depressive symptoms as well as a resting-state functional MRI (fMRI) before and after the 12-week study period.

Results: There were no between-condition differences in depressive symptoms at baseline. Participants who were randomly assigned to the intervention condition demonstrated reductions in depressive symptoms compared with minimal changes for those who underwent the control condition. This corresponded with significant changes in resting-state functional connectivity within the default-mode network (DMN).

Conclusions: The overall pattern of results suggests that resting-state functional connectivity within the DMN may represent a potential neural mechanism underlying the beneficial effects of exercise on depressive symptoms in people with MS. Such results warrant future consideration in the design and conduct of future RCTs that aim to treat MS-related depression with aerobic exercise training in people with MS who have been prescreened for clinical depression.

Background: The quality of life (QOL) of people with multiple sclerosis (MS) is considerably poorer than the QOL of people with other chronic diseases. QOL management should not be restricted to only clinical aspects but also factors modifying QOL. The aim of this study was to identify the sociodemographic and clinical determinants of QOL in people with MS.

Methods: A cross-sectional study conducted from 2022 to 2023 included 200 participants aged 18 and over recruited from the Hassan II University Medical Hospital in Fez, Morocco. QOL assessment was performed using the Arabic version of the Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire. Univariate analysis using Student t test, analysis of variance, and Pearson correlation was performed, followed by multiple linear regression analysis to determine the main factors associated with QOL.

Results: QOL was impaired in the physical health (PH) (48.51±22.08) and mental health (MH) (48.69±17.18) components of the MSQOL-54. Male sex, unemployment, and high scores on the Expanded Disability Status Scale (EDSS) were factors significantly associated with lower scores on both the PH and MH components. In contrast, later age at MS diagnosis and older age were significantly associated with worse PH and MH, respectively. EDSS score was a strong predictor of QOL (PH: β = -34.983; 95% CI, -39.64 to -30.31; MH: β = -23.383; 95% CI, -27.62 to -19.14).

Conclusions: The results highlight the importance of sociodemographic and clinical determinants of QOL. Clinicians need to integrate a biopsychosocial approach into therapeutic education programs, considering the risk factors and specific needs of people with MS to optimize their QOL.

Background: Resilience has been recognized as a vital protective factor in coping with stress and adversity. Multiple sclerosis (MS) caregiving is a complex and demanding role, often characterized by challenges.

Methods: Caregivers of people with MS were recruited through health care professionals affiliated with the Jacobs MS Center for Treatment and Research in Buffalo, New York. Resilience was assessed by the Connor-Davidson Resilience Scale (CD-RISC-25) and the Health-Resilience-Stress Questionnaire (HRSQ). We examined the influence of personality traits (NEO Five-Factor Inventory-3), coping strategies (Brief Coping Orientation to Problems Experienced Inventory), quality of life (Adult Carer Quality of Life Questionnaire), and caregiver burden (Zarit Burden Interview) on resilience.

Results: In our study of 98 caregivers (70.4% men; average age, 60 years), 91.8% were partners of people with MS. Out of a maximum score of 100, CD-RISC-25 scores were an average (SD) of 75.5 (14.4) and HRSQ scores were an average of 74.8 (12.9). Quality of life was positively associated with both resilience measures (r = 0.60 for CD-RISC-25; r = 0.70 for HRSQ), whereas higher resilience was linked to lower caregiver burden (r = -0.40 for CD-RISC-25; r = -0.49 for HRSQ). CD-RISC-25 showed higher resilience negatively correlated with neuroticism (r = -0.65) and positively with extroversion (r = 0.57) and conscientiousness (r = 0.59). HRSQ also showed strong negative correlation with neuroticism (r = -0.76) and positive correlations with extroversion (r = 0.60), conscientiousness (r = 0.53), and agreeableness (r = 0.24).

Conclusions: Caregivers for people with MS showed relatively high resilience levels, positively correlating with quality of life and reduced caregiver burden. Furthermore, resilience correlated inversely with neuroticism and positively with extroversion and conscientiousness. Future research should target personalized interventions, particularly for caregivers with low resilience.