International journal of MS care最新文献

Background: People with multiple sclerosis (MS) experience motor and nonmotor symptoms that affect daily life. Although regular physical activity (PA) may enhance the overall well-being of people with MS, they tend to have lower activity levels than healthy individuals. This study aims to investigate the impact of usual-care physiotherapy on PA and self-efficacy in people with MS and identify prerehabilitation factors that influence positive changes in PA with physiotherapy.

Methods: Forty-one people with MS undergoing physiotherapy with a median (IQR) age of 54.00 (17.00) years and an Expanded Disability Status Scale score of 6.00 (2.00) points were assessed on the first days (T0) and last days of their rehabilitation period (T1), and 6 weeks after it ended (T2). Instrumental assessment utilized Fitbit Versa trackers, measuring daily steps and moderate/vigorous PA engagement (MVPA). Self-efficacy, perceived fatigue, walking ability, and quality of life were measured using the Self-Efficacy in Multiple Sclerosis scale (SEMS), the Fatigue Severity Scale, the 10-Meter Walk Test, and the Short Form-12 Health Survey.

Results: Usual-care physiotherapy did not improve (P > .05) daily steps (T0: 4139 [3333]; T1: 4438 [2505] steps per day), MVPA (T0: 6.00 [15.6]; T1: 10.52 [16.30] minutes per day), or self-efficacy (SEMS: T0: 42.0 [10.8]; T1: 40.5 [8.7] points). Low perceived fatigue, better overall PA, and good physical health perception were identified as predictors of positive changes in PA after physiotherapy.

Conclusions: Usual-care physiotherapy focusing on mobility did not result in significant improvements in PA or self-efficacy for people with MS. Perceived fatigue and overall PA before physiotherapy impacted PA levels after rehabilitation. Future interventions may benefit from integrating motivational strategies into the rehabilitation protocol to increase PA levels.

Background: Social support plays a significant role in maintaining one's health and well-being. A perceived or objective lack of close friendships can indicate loneliness and/or limited social support. The present study aimed to examine the impact of having a close friend on the overall health and psychological well-being (PWB) of women with multiple sclerosis (MS).

Methods: A prospective national study examining factors associated with unemployment in MS enrolled 160 women. As part of an online survey, participants were asked whether they had someone they could confide in. Group comparisons on measures of health, PWB, quality of life (QOL), social support, and marital/partner satisfaction were made between those who said yes and those who said no. Regression analyses were also conducted to determine the role of having a confidant and other lifestyle factors related to health, PWB, and QOL.

Results: Approximately 19% of participants reported not having a confidant. These individuals reported worse perceived general, physical, and mental health and more severe depression, anxiety, fatigue, sleep disturbance, and pain. They also reported lower levels of PWB, life satisfaction, social support, and marital/partner satisfaction. Regression analyses revealed that having a confidant was a significant predictor of physical and mental health, PWB, and QOL, even when considering other lifestyle factors.

Conclusions: Results suggest that the simple question Do you have someone to confide in? may be an important indicator of individuals' health and well-being. Practitioners should routinely assess patients' socialization and discuss the importance of social networks and communal activity.

BACKGROUND: For 80% of people living with multiple sclerosis (MS), informal care is provided by a caregiver. Caregivers spend an average of 6.5 hours a day providing care, which equates to nearly full-time, unpaid work. Although it is widely accepted that informal caregivers play an essential support role in the lives of people with MS, there is a general paucity of MS caregiver research. The findings of the few available research studies are often interpreted from a clinical perspective, without consideration of the many sociocultural aspects that produce a widely heterogeneous population of caregivers and care recipients. For many caregivers, caregiving can be accompanied by considerable burden, which can have a negative impact on their mental and physical health. However, with the lack of diverse caregiver research available, the full extent of the caregiver experience, burdens, and unmet needs is still relatively unknown. In this review, we discuss the key contributing factors to caregiver burden in MS across diverse caregiving groups, identify gaps in our understanding of caregiving responsibilities as they contribute to caregiver burden, and discuss potential strategies and interventions to reduce caregiver burden. We examine these topics from the clinician, caregiver, and care recipient perspectives.

BACKGROUND: Over the past 30 years, the treatment landscape for multiple sclerosis (MS) has become increasingly complex. All MS disease-modifying therapies (DMTs) and several symptomatic medications are designated specialty medications, and their financial coverage is subject to complicated insurance processes and a wide array of patient support programs. Many patients receiving MS DMTs need ongoing monitoring or enrollment in a Risk Evaluation and Mitigation Strategy program. Integrated pharmacy services can facilitate financial, technical, and educational aspects of providing specialty medications. Although pharmacy services are often part of the care team for patients with complex chronic medical conditions, MS clinics may not have the benefit of full pharmacy services. We present 4 models of MS health care delivery and discuss how integrating pharmacy services into an MS multidisciplinary team can potentially increase the efficiency and quality of health care delivery. Clinical pharmacists, working with other providers, can optimize and accelerate access to medications requiring prior authorization, improve patient outcomes by promoting medication adherence and persistence, enhance safety by monitoring laboratory findings and potential drug-drug interactions, and minimize clinical workflow burden by improving process efficiency, which may be cost-effective for the MS health care delivery system.

Multiple sclerosis (MS) is a chronic, inflammatory, and neurodegenerative condition characterized by the immune system's attack on the myelin sheath, leading to neurological dysfunction. While the prevalence of MS in Africa remains lower than in other regions, it has been rising steadily in recent years, with unique challenges hindering its effective management. These challenges include limited health care resources, inadequate diagnostic tools, financial constraints on accessing disease-modifying therapies, and a lack of trained health care professionals (HCPs). Cultural stigma surrounding MS further complicates patient care and treatment adherence. However, ongoing efforts by patient organizations, international collaborations, and local HCPs are focused on raising awareness, enhancing diagnosis and treatment access, and training HCPs. Future directions include integrating MS into national health policies, expanding education and research initiatives, and improving patient support networks. These efforts are vital in addressing the growing burden of MS in Africa and ensuring equitable access to care.

Background: The role of resilience on functional outcomes in multiple sclerosis (MS) has been debated. One theorized pathway is that healthy lifestyle behaviors contribute to better functioning capabilities, which resilient individuals with MS tend to engage in more. This study aimed to explore whether resilience might influence functioning in individuals with MS indirectly through specific lifestyle behaviors.

Methods: Participants (N = 64) were individuals with MS who completed measures assessing resilience (Multiple Sclerosis Resiliency Scale; MSRS), lifestyle behaviors (Simple Lifestyle Indicator Questionnaire and Alcohol Use Disorders Identification Test), and functional capabilities (PROMIS Physical Function-Short Form 20a; PROMIS-PF). Mediation models were constructed with the MSRS as the independent variable and significant individual lifestyle behaviors as the mediators, and PROMIS-PF as the dependent variable, with demographics and disease-related factors as covariates.

Results: Physical activity was the only lifestyle behavior associated with functioning capabilities (ρ = 0.43, P < .001). Resilience had a significant indirect effect on functioning through physical activity (b = 0.16; 95% CI, 0.04-0.32). Its corresponding direct effect was not significant (b = -0.02, P = .860).

Conclusions: These findings suggest that resilience indirectly influences functioning through engagement in physical activity. The results highlight the important role of resilience in promoting well-being among individuals with MS.

Background: Multiple sclerosis (MS) is a chronic, unpredictable, and potentially highly debilitating neurological condition. It is often diagnosed in young adulthood but can start earlier in childhood and adolescence. When MS is diagnosed and treated in pediatric clinics, the level of support is often higher than in adult clinics. A dedicated young adult (YA) support group may help fill the gap that patients may experience when transitioning to adult care. This qualitative descriptive pilot study explores the feasibility and outcomes of a virtual support group for YAs with MS receiving care from an adult MS center.

Methods: This purposive, convenience sample consisted of 8 participants between the ages of 18 and 25 years who met monthly for 6 virtual sessions. Participants completed a pregroup questionnaire with 6 open-ended questions, and the sessions were based on these results. The results of the pilot implementation were evaluated through postgroup questionnaires with 5 open-ended questions. The data were analyzed using thematic analysis.

Results: Several themes were identified from the pregroup questionnaires, including the transition from pediatric to adult care, support, coping skills, and the need for more information about MS. Themes from the postgroup questionnaire included suggestions for smooth transfer from pediatric to adult care, benefits of support and feeling less alone, coping strategies, and increased knowledge about MS.

Conclusions: The results of this study suggest that a dedicated virtual support group may provide YAs with MS with psychosocial support and validation through shared experiences and knowledge about living with MS.

Background: Vaccine literacy (VL) is an individual's ability to obtain, understand, and use information related to vaccines to make informed health decisions. This concept is strongly correlated with vaccine hesitancy, which is common among people with multiple sclerosis (MS). The study aims to assess VL in people with MS.

Methods: A cross-sectional study was conducted from April 2023 to September 2023 at the MS Policlinic of Bari. A structured questionnaire of 10 questions from the European Health Literacy Survey Consortium covered vaccination behavior, beliefs, trust, and perceived risks, and 4 questions from the Health Literacy Population Survey 2019-2021 Vaccine (HLS19-VAC) tool covered access, understanding, evaluation, and application of vaccination information.

Results: There were 157 respondents (mean age, 34.77 years; 86.4% women; 90.4% with relapsing-remitting MS). Fewer than half (41.4%) had a high school diploma, 73.9% were employed, and 93% were satisfied with nursing care. The HLS19-VAC questionnaire results revealed high vaccination adherence (99%) but mixed beliefs about vaccine safety and efficacy. Trust in vaccines was generally high, though VL scores were lower. Significant correlations were found between VL and education level.

Conclusions: Findings from this study reveal high vaccination adherence and trust among people with MS, but VL remains low, leading to misconceptions and hesitancy. Interventions tailored to age and education level offered by health care providers, especially MS nurses, are essential to improve VL and reduce vaccine hesitancy.

Background: Advances in serum proteomics have provided more precise tools for the characterization of multiple sclerosis (MS) and enabled enhanced clinical management of the disease. The multivariate proteomic Multiple Sclerosis Disease Activity (MSDA) test has been analytically and clinically validated.

Methods: This is a single-center retrospective case series. Four women with MS were monitored between 2022 and 2023 with up to 2 MSDA time points. Their full clinical histories and exams, along with treatment and MRI changes, were collected with the MSDA tests.

Results: Patients' baseline and follow-up MSDA scores were consistent with disease activity, treatment response, and disease stability.

Conclusions: We provide a real-world case series to show that MSDA could help to determine MS disease activity at baseline and throughout the disease course. MSDA could help to differentiate clinically stable vs active patients to monitor DMT treatment response.

Background: Despite unequivocal evidence for the benefits of regular physical activity (PA), many people with multiple sclerosis (MS) and their family caregivers find it challenging to fully participate to the same extent as the general population. Achieving full participation in PA requires addressing both quantity and quality of participation. Although elements fostering quality participation (QP) in people with disabilities are increasingly recognized, our knowledge of how QP is experienced and fostered in dyadic PA interventions targeting MS dyads is limited. Therefore, we aimed to explore QP experiences of MS dyads during a 12-week, group-based, dyadic, behavioral PA intervention to inform future efforts to optimize full participation in PA in these groups.

Methods: We conducted semistructured interviews with 6 participants who completed the dyadic intervention. Data were inductively analyzed using thematic analysis and deductively mapped to the Quality Parasport Participation Framework.

Results: We identified 6 themes mapped to the 6 building blocks (autonomy, belonging, challenge, engagement, mastery, and meaning) of quality participation that provide insights into how people with MS and their caregivers experienced QP in the intervention. Additionally, various intervention characteristics that fostered QP experiences were identified, including the dyadic approach, program duration, financial incentivization, individualized tailoring of program components, group composition and dynamics, facilitator knowledge and expertise related to MS and caregiving, and the opportunity for participants to apply the knowledge gained in the group sessions.

Conclusions: Our findings outline QP considerations for researchers and interventionists designing dyadic PA programs in MS, offering insights that can inform the development of such programs to support full participation for both people with MS and their caregivers.