International journal of MS care最新文献

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.

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.

Background: Multiple sclerosis is a chronic neurological disease that is commonly diagnosed in middle age and disproportionately affects women. Consequently, middle-aged men (as partners and husbands) are often the caregivers, a unique group in comparison with carers for people with other long-term neurological conditions, who are predominately women. Previous research has indicated that male carers respond differently from their female counterparts in terms of carer burden. Authors of gender role construct literature have reported that gender role conflict and gender role flexibility have an influence on men's attitudes about seeking help and support. The aim of this study was to investigate whether gender role conflict and gender role flexibility have an effect on help-seeking attitudes and carer burden within this unique group of carers.

Methods: Data were collected from an international sample of 68 participants, using results from online and paper surveys, and were primarily analyzed using hierarchical regression analysis.

Results: Results indicated that gender role conflict and gender role flexibility explained a significant variance in burden but were not significantly associated with attitudes toward help-seeking. Rather, appearance of coping was posited as a potential variable mediating the relationship between gender role conflict and help-seeking attitudes.

Conclusions: These findings indicate how gender role constructs affect carer coping, suggesting that support for male carers may require tailored interventions. Appearance of coping is highlighted as a variable that requires further investigation. Further, a direction for psychoeducational interventions applicable to other groups of male carers is suggested.

Background: The PANORAMA survey aimed to assess current treatment practice for individuals with new diagnoses of relapsing-remitting multiple sclerosis (RRMS) in the United Kingdom and to explore variations in treatment approaches with an emphasis on escalation vs early high-efficacy treatment (HET) and treatment goals.

Methods: Health care professionals (HCPs) from the UK treating patients with RRMS took part in interviews facilitated by a structured questionnaire. Data were analyzed descriptively using quantitative or qualitative methods, as appropriate.

Results: Thirty-eight HCPs from 38 UK centers took part in the survey, including 20 MS consultants and 13 MS specialist nurses. Seventy-four percent (n = 28 of 38) of HCPs strongly agreed and 24% (9 of 38) agreed that early treatment is essential for better outcomes. HCPs reported that they currently treat a mean (SD) of 58.3% (20.8%) and 42.1% (21.8%) of patients with new diagnoses of RRMS with early HET or escalation approaches, respectively. Thirty-four percent (13 of 38) of HCPs reported a discrepancy between current treatment approach and the approach they would like to take, which would be 66.2% favoring early HET and 33.8% favoring escalation approaches. The factors influencing the choice of treatment approach were overall patient health profile (45%, 17 of 38) and patient choice (39%, 15 of 38). The most important treatment goals were to reduce relapses (63%, 24 of 38), delay disability progression (58%, 22 of 38), and maintain quality of life (50%, 19 of 38).

Conclusions: The survey highlights variation among HCPs in the UK in current vs ideal use of escalation or early HET approaches and factors influencing choice of treatment approach.

Background: Fatigue: Take Control (FTC) is a multimodal self-management program. Results of a previous clinical trial showed its effectiveness at improving fatigue related to multiple sclerosis (MS). The objectives of this study were to use the very long-term data from the FTC study to understand fatigue management strategies used 5 years after enrollment, identify facilitators and barriers to utilizing strategies, and explore the potential relationships between the strategy used and fatigue outcomes.

Methods: This study adopted a cross-sectional survey design. A subset of the original FTC clinical trial participants was invited to complete the Modified Fatigue Impact Scale for fatigue severity measurement and a 17-item questionnaire about their fatigue management strategies 5 years after enrollment. Descriptive statistics and content analysis were used to analyze quantitative and qualitative data using the COM-B (capability, opportunity, motivation-behavior) model for behavior change as a framework.

Results: Planning daily activities and prioritizing tasks were the fatigue management strategies most often reported. Facilitators to utilizing management strategies included access to enabling devices, paid professional help, companions, and maintaining a positive attitude. Barriers to implementing strategies included high cost, the presence of other health problems, and temperature sensitivity. Internal focused strategies showed a trend toward reducing fatigue impact when controlled for typology group assignment.

Conclusions: Future work may focus on promoting low-cost strategies to help people with MS manage fatigue. Internal factors (eg, motivation) play an important role in influencing the application of MS fatigue self-management strategies. Future clinical trials with larger sample sizes that assess the applicability of the COM-B model are warranted.

Background: Multiple sclerosis (MS) encompasses various symptoms, including fatigue, pain, spasticity, motor dysfunction, postural instability, sexual and bladder dysfunction, and cognitive impairment. Despite the documented benefits of exercise for alleviating MS symptoms, adherence to physical activity guidelines often is low, resulting in sedentary lifestyles among people with MS. This qualitative study explores the experiences of individuals with MS who participated in a ballroom dance intervention.

Methods: Thirteen community-dwelling individuals with MS participated in five 1-hour focus group sessions as part of a larger ballroom dance study. The Framework Method, utilizing NVivo qualitative analysis software, was applied to verbatim transcripts.

Results: Four themes emerged. (1) Physical and psychological benefits: Ballroom dance improved perceived symptoms, including strength, endurance, coordination, and balance, as well as reduced fatigue and alleviated depression. (2) Positive social support leading to enjoyment/fun: Ballroom dance fostered positive support and served as an enjoyable activity, including for couples. (3) Improved confidence: The dance intervention instilled confidence in physical abilities and emotional well-being. (4) Physical and social facilitation of activity: Ballroom dancing facilitated activity because partners were able to assist when fatigue or balance issues occurred, and the intervention provided social acceptability.

Conclusions: Recreational ballroom or social dance was well tolerated, and individuals with MS and researchers perceived it as beneficial as it led to positive physical and psychological changes. This partnered social dance intervention provided an emotionally and physically supportive environment, improved confidence, and facilitated activity. This study contributes to the understanding of the potential of recreational ballroom dancing to promote physical activity and well-being among people who are living with MS.