International journal of MS care最新文献

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.

Background: Fatigue is common in multiple sclerosis (MS); it significantly impairs quality of life, and treatment options are limited. A randomized controlled trial of Elevida, a self-guided, online German fatigue intervention, showed significant benefit. We tested an English version of Elevida with people with MS in Australia.

Methods: Participants were volunteers with MS who self-reported at least mild fatigue (≥ 43 on the Fatigue Scale for Motor and Cognitive Functions scale), some mobility (Expanded Disability Status Scale < 8), and no or mild cognitive difficulties (≤ 32 on the Multiple Sclerosis Neuropsychological Questionnaire). Participants completed the 9-week English Elevida program, commenting on and rating its acceptability. The Chalder Fatigue Scale was completed at baseline, end-of-program, and 2 months later. We undertook qualitative (thematic analysis) and quantitative (before/after differences, tested using paired t test) analyses.

Results: Thirty-eight people with MS expressed an interest in the study; 26 were eligible; 20 began the study. Fifteen participants (75%) completed the program (mean [SD]: 58.9 [10.5] years of age, 67% women, 9 with relapsing MS, 6 with progressive MS). Over 90% of completing participants rated acceptability as good or very good, and approximately 70% found the program helpful. Three themes were identified: Positive or negative comments on program features, incorrect assumptions in program content, and personal experiences and reflections. Significant improvement (P < .01) in fatigue scores from baseline to program completion was maintained 2 months after program completion.

Conclusions: Elevida was acceptable and effective for MS-related fatigue. Identified themes will guide further development of the program to satisfy users' sense of autonomy, competence, and relatedness.

Background: Exercise training may be the most effective nonpharmacological symptomatic treatment for patients with multiple sclerosis (MS). Physical therapy (PT) can facilitate increased exercise through education, individualized exercise routines, goal setting, and supportive resources. However, traditional PT focuses on function restoration rather than proactive measures to prevent the advancement of morbidity. We present the application of a proactive physical therapy (PAPT) approach for individuals with MS.

Methods: Neurologists referred patients to PT shortly after their MS diagnosis. Patients completed a shared decision-making-based evaluation of their current functional level, received education on exercise guidelines and goal-setting support, and established an exercise routine of an appropriate intensity. The patient and physical therapist communicated via email and telephone at 1 and 3 months. Assessments included physical function, Fatigue Severity Scale (FSS), and self-reported exercise at 6 months.

Results: Three patients were referred directly to PAPT, and 1 transitioned from restorative PT. At 6 months, 3 patients reported regular aerobic, strengthening, and flexibility participation that met or exceeded established exercise recommendations. Two of 3 patients demonstrated clinically meaningful changes in functional outcome measures (eg, 10-meter Walk Test), a third patient remained stable in all functional outcome measures. Three patients reported significant improvements on the FSS at 6 months. The fourth patient did not complete the 6-month follow-up due to pregnancy complications but reported meeting guidelines at 3 months.

Conclusions: A PAPT model of care is feasible and effective for patients who have been newly diagnosed with MS. With minimal PT visits, patients met established exercise guidelines and maintained or improved physical function.

Latin America (LATAM) is a diverse region with more than 30 countries, each varying in cultural, economic, and social aspects. While multiple sclerosis (MS) care in LATAM has improved, there are still challenges to address. Epidemiologic studies have shown varying incidence rates of MS in the region, influenced by factors such as genetics, environmental conditions, and regional diversity. Scientific research on MS in LATAM has increased, with publications and consensus guidelines emerging. However, access to disease-modifying treatments remains a significant challenge in many countries due to affordability issues and limited availability of certain therapies. The region also faces obstacles in providing comprehensive MS care, including rehabilitation programs and diagnosis tools. There are collaborative efforts and initiatives in LATAM that are working toward overcoming these challenges and improving the overall quality of care for people with MS in the region.

Background: For individuals with multiple sclerosis (MS), treatment interruption can result in relapse/recurrence of the disease activity. Currently, there are no consensus guidelines about whether an abrupt stop with a short washout period or gradual tapering is better for fingolimod (Gilenya) cessation. We investigated the impact of the fingolimod discontinuation strategy on the recurrence of disease activity and the rebound occurrence of symptoms during washout.

Methods: This was a retrospective, observational, multicenter study of individuals with MS in Egypt and Kuwait. The charts of patients on fingolimod therapy were screened to collect data on the impact of drug cessation strategies on disease activity and relapse occurrence. Disease relapse after cessation was defined as a relapse that occurred in the previous 12 months despite using a first-line treatment option or 2 relapses in the previous 12 months.

Results: In a cohort of 100 patients, 58 had an abrupt cessation and 42 had a gradual tapering. Compared with abrupt cessation, gradual tapering was associated with a significantly lower rate of disease relapse (4.8% vs 81%, respectively; P = .001). Abrupt cessation also resulted in increased MRI findings of new lesions (24.1%; P = .29), enhancing lesions (32.8%; P = .5), and enlarging lesions (6.9%; P = .59); however, none of the MRI findings were significant. Other risk factors showed no significant association with disease relapse after fingolimod cessation.

Conclusions: Gradual fingolimod tapering is highly recommended to decrease the risk of rebound and severe disease reactivation. A prolonged washout should be avoided for lymphocyte recovery.

Background: Multiple sclerosis (MS) disease factors, such as cognitive impairment, can cause disruptions in meaningful activities, also known as illness intrusiveness. Although the association between specific objective measures of cognition and illness intrusiveness has been documented in MS, the contributions of individuals' perceptions of their cognition or whether any psychological factors can buffer the relationship have yet to be explored. This study aimed to (1) simultaneously examine objective processing speed and subjective cognition as disease factors contributing to illness intrusiveness and (2) explore whether resilience moderates the relationship between cognition and illness intrusiveness.

Methods: Participants (N = 112) were individuals with MS who completed the Illness Intrusiveness Ratings Scale (IIRS), Symbol Digit Modalities Test (SDMT), Perceived Deficits Questionnaire (PDQ), and MS Resiliency Scale (MSRS) as part of a larger cross-sectional study. A hierarchical linear regression was done, followed by individual moderation analyses.

Results: Both the PDQ (b = .43, P = .001) and SDMT (b = -4.17, P = .003) were independent predictors of the IIRS. There was no evidence of moderation in either model, although the MSRS independently contributed to the IIRS.

Conclusions: Among individuals with MS, objective processing speed and subjective cognition were independently associated with illness intrusiveness, highlighting the importance of considering both cognitive performance and perceptions as contributing factors to life disruptions.

Background: Studies addressing frailty in the context of multiple sclerosis (MS) are emergent. This study explores cognitive function in older adults with MS as a function of frailty status.

Methods: This cross-sectional study used baseline data from a feasibility randomized controlled trial of a home-based exercise program for older adults with MS. Frailty was verified using performance scores from the Short Physical Performance Battery (SPPB) and cut points available in the literature. Cognitive function was assessed using the Brief International Cognitive Assessments for Multiple Sclerosis (BICAMS). Data were analyzed using inferential statistics adopting a significance of P < .05.

Results: Data from 26 older adults with MS (≥60 years) were analyzed. The majority of the participants were women, and over 85% of the sample had the relapsing-remitting form of MS. Participants reported a mean of more than 20 years of disease and a moderate level of disability (Expanded Disability Status Scale score = 4). Nearly 58% of the sample was classified as frail based on SPPB scores. Univariate analysis demonstrated that frail older adults performed significantly worse (P < .05) on all 3 BICAMS tests. However, after controlling for age and disability level, only visuospatial memory remained significant between frailty groups (P = .043).

Conclusions: Our findings suggest reduced cognitive function in frail older adults with MS compared with their nonfrail counterparts. This highlights the need to develop interventions to improve cognitive function and to reverse frailty for older adults with MS.