Multiple Sclerosis Experience Research Articles

Avoiding sliding doors: small changes, big difference in multiple sclerosis and neurogenic bladder and bowel

The aim of this article is to illustrate the experienced and optimal patient journeys of people with multiple sclerosis. A review of research published in the British Journal of Neuroscience Nursing in 2024 was conducted to build on the insights and provide guidance around each part of the patient journey, from diagnosis to care. A composite patient journey was created based on the experiences of the MS patients interviewed as part of the ALERT study. Many people with multiple sclerosis experience delayed diagnosis and management of bladder and bowel dysfunction, leading to significant physical and psychosocial consequences. The composite patient journey showed common clinical touchpoints where care was sub-optimal. There was a lack of early discussions about bladder and bowel issues, insufficient patient education and missed opportunities for intervention. Early diagnosis, patient education and integrated care pathways are essential for managing neurogenic bladder and bowel dysfunction in people with multiple sclerosis. By addressing these issues proactively, healthcare providers can improve patient outcomes and quality of life. Policy initiatives should focus on increasing awareness, education and developing clinical guidelines to support effective bladder and bowel management. Integration of care services reduces inequities and improves wellbeing.

Head and neck cooling enhance exercise tolerance in individuals with multiple sclerosis

BackgroundIndividuals with Multiple Sclerosis (MS) experience impairments in heat dissipation, compromising core temperature regulation during exercise. ObjectiveTo examine the efficacy of combined head-and-neck cooling as administered via a commercially available cooling cap and neck wrap in mitigating increases in core temperature during exercise. MethodsOn separate days, ten (7 females) adults (46.1 ± 11.6 years) with relapsing-remitting MS performed semi-recumbent cycling consisting of an incremental exercise bout to volitional fatigue in a temperate environment (23 °C, 50 % relative humidity) while undergoing head-and-neck cooling using a cooling cap and neck wrap maintained at 10 °C (COLD) or 24–26 °C (NEUTRAL). Prior to and following a 30-minute post-exercise recovery, functional capacity was assessed by a battery of tests consisting of a 2-minute walk test, Timed 25-Foot Walk test, sit-to-stand test, and Berg Balance Scale. Core (ingestible pill) and skin temperatures were recorded continuously. The level of fatigue was measured with questionnaires. ResultsThe duration of the incremental exercise test increased with the application of COLD (28.4 ± 5.1 min) versus NEUTRAL water (vs 20.8 ± 5.1 min) (p = 0.001) and was paralleled by a significant reduction in body temperatures (∼1 °C, p < 0.05). The distance covered during the 2-min walk test performed after the incremental exercise test increased with the COLD (176.5 ± 0.6 m), relative to the NEUTRAL condition (147.7 ± 43.5 m) (p = 0.01). Fatigue levels did not change between conditions. ConclusionWe show that head-and-neck cooling with cold water effectively enhances exercise tolerance and mitigates increases in core temperature during exercise in individuals with MS.

Clinical characteristics and impact on patient-reported outcomes and quality of life of people with ambulatory secondary progressive multiple sclerosis: DISCOVER study

BackgroundPeople with secondary progressive multiple sclerosis (pwSPMS) experience increasing disability, which impacts negatively on their health-related quality of life (HRQoL). Our aims were to assess the impact of secondary progressive multiple sclerosis (SPMS) on functional status and HRQoL and describe the clinical profile in this population. MethodsDISCOVER is an observational, cross-sectional, multicenter study with retrospective data collection in real-world clinical practice in Spain. Sociodemographic and clinical variables, functional and cognitive scales, patient-reported outcomes (PROs), and direct healthcare, and non-healthcare and indirect costs were collected. ResultsA total of 297 evaluable pwSPMS with a EDSS score between 3-6.5 participated: 62.3 % were female and 18.9 % had active SPMS. At the study visit, 77 % of them presented an Expanded Disability Scale Score (EDSS) of 6–6.5. Nearly 40 % did not receive any disease-modifying treatment. Regarding the working situation, 61.6 % were inactive due to disability. PROs: 99.3 % showed mobility impairment in EuroQoL-5 Dimensions-5 Levels, and about 60 % reported physical impact on the Multiple Sclerosis Impact Scale-29. Fatigue was present in 76.1 %, and almost 40 % reported anxiety or depression. The Symbol Digit Modalities Test was used to assess cognitive impairment; 80 % of the patients were below the mean score.Participants who presented relapses two years before and had high EDSS scores had a more negative impact on HRQoL. PwSPMS with a negative impact on HRQoL presented a higher cost burden, primarily due to indirect costs. ConclusionsPwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.

The Immediate Effect of the Novel Hybrid Passive Spring Damper Ankle-Foot Orthosis on Spatiotemporal Parameters of Walking in Patients with Multiple Sclerosis

ABSTRACT Introduction Patients with multiple sclerosis (PwMS) experience damage to their central nervous system, which can lead to unilateral or bilateral drop foot. The presently utilized ankle-foot orthoses (AFOs) for PwMS have exhibited limited clinical efficacy. Objective This current study evaluated the immediate effects of the Novel Hybrid Passive Spring Damper Ankle-Foot Orthosis (HPSDAFO) on walking in PwMS. Study design A cohort trial. Methods Twelve PwMS suffering of unilateral drop foot took part in this study. They were given the novel HPSDAFO and underwent kinematic assessment including walking along a 10-m walkway at a self-selected speed, both with and without the HPSDAFO. Results The novel HPSDAFO device significantly changed gait parameters of ankle range of motion, single limb support duration, and step and stride length of the affected side (P &lt; 0001). Furthermore, the device also improved the symmetry index and resulted in increased walking speed and cadence. Conclusions The application of the novel HPSDAFO on the affected side of PwMS resulted in a notable enhancement in the symmetry of spatial parameters, which highlights the need for additional research in this area. Clinical Relevance Using the novel HPSDAFO, PwMS can walk without adverse effects, promoting the normalization of their spatiotemporal walking parameters.

Volumetric and diffusion MRI abnormalities associated with dysarthria in multiple sclerosis

Abstract Up to half of all people with multiple sclerosis experience communication difficulties due to dysarthria, a disorder that impacts the motor aspects of speech production. Dysarthria in multiple sclerosis is linked to cerebellar dysfunction, disease severity and lesion load, but the neuroanatomical substrates of these symptoms remain unclear. In this study, 52 participants with multiple sclerosis and 14 age- and sex-matched healthy controls underwent structural and diffusion MRI, clinical assessment of disease severity and cerebellar dysfunction, and a battery of motor speech tasks. Assessments of regional brain volume and white matter integrity, and their relationships with clinical and speech measures, were undertaken. White matter tracts of interest included the interhemispheric sensorimotor tract, cerebello-thalamo-cortical tract, and arcuate fasciculus, based on their roles in motor and speech behaviours. Volumetric analyses were targeted to Broca’s area, Wernicke’s area, the corpus callosum, thalamus, and cerebellum. Our results indicated that multiple sclerosis participants scored worse on all motor speech tasks. Fixel-based diffusion MRI analyses showed significant evidence of white matter tract atrophy in each tract of interest. Correlational analyses further indicated that higher speech naturalness - a perceptual measure of dysarthria – and lower reading rate were associated with axonal damage in the interhemispheric sensorimotor tract and left arcuate fasciculus in people with multiple sclerosis. Axonal damage in all tracts of interest also correlated with clinical scales sensitive to cerebellar dysfunction. Participants with multiple sclerosis had lower volumes of the thalamus and corpus callosum compared to controls, though no brain volumetrics correlated with measures of dysarthria. These findings indicate that axonal damage, particularly when measured using diffusion metrics, underpin dysarthria in multiple sclerosis.

Structural relations of illness perception, fatigue, locus of control, self-efficacy, and coping strategies in patients with multiple sclerosis: a cross-sectional study

BackgroundPatients with multiple sclerosis (MS) experience extensive problems due to fatigue and illness perception. Reducing these problems may improve these patients’ quality of life (QoL). Accordingly, the current study is aimed at investigating the mediating role of self-efficacy, locus of control, coping strategy, and outcome expectancy in the relationship between illness perception and fatigue severity in patients with MS.MethodsIn a cross-sectional analytical study, data of 172 MS patients were collected by self-report questionnaires including illness perception questionnaires (IPQ-R), Multiple Sclerosis Self-Efficacy (MSSES) scale, health locus of control (MHLC), coping strategies in MS(CMSS), outcome expectancy, level of physical activity (IPAQ-SF), patient activation measure (PAM-13) and fatigue severity scale (FSS). The data were analyzed using linear and multiple regression analysis in SPSS software version 24 (SPSS Inc., Chicago, IL, USA).ResultsThe final model explained 62% of the fatigue variance. Illness perception both directly and indirectly (through self-efficacy, physical activity level, internal health locus of control, patient activation, and negative coping strategies) could predict the participants’ fatigue severity. Among the mediating variables, internal health locus of control, self-efficacy, and negative coping strategies had the greatest impact, respectively. moreover, outcome expectancy variable did not a mediating role in the aforementioned relationship.ConclusionsTo enhance the well-being of MS patients and to improve the efficiency of treating MS related fatigue, a comprehensive treatment protocol is needed, encompassing psychological factors affecting fatigue severity.

Measurement Properties of Backward Walking and Its Sensitivity and Feasibility in Predicting Falls in People With Multiple Sclerosis.

People with multiple sclerosis (MS) experience mobility impairments that elevate fall risk, increasing the need to identify clinical measures that accurately predict falls. Backward walking (BW) better differentiates fallers from nonfallers in MS. However, no studies have reported the measurement properties of the backward walking Timed 25-Foot Walk (B-T25-FW) and BW metrics, like BW velocity. Additionally, it is unknown whether BW can predict future falls in MS or its link to activity levels. This study assessed the reliability and responsiveness of B-T25-FW and BW metrics, including BW velocity. It also examined whether BW could predict falls at 3 and 6 months and its association with activity levels. During 2 separate visits, 23 people with MS completed the forward walking Timed 25-Foot Walk (F-T25-FW) and B-T25-FW, as well as forward walking and BW assessments in which spatiotemporal measures were recorded. Test-retest reliability was determined with intraclass correlation coefficients, and minimum detectable changes were calculated. Correlation analyses explored the relationship between BW velocity, B-T25-FW, prospective falls, and activity levels. B-T25-FW and BW velocity exhibited excellent test-retest reliability. Large effect sizes to interpret clinically meaningful change in the B-T25-FW and BW velocity were also found. Both metrics demonstrated modest negative correlations with falls at 3 and 6 months and correlated strongly with very active minutes at 3- and 6-months post study. The B-T25-FW and BW velocity are effective and reliable in clinical use for evaluating functional mobility in people with MS, are sensitive enough to detect subtle changes, and may be a meaningful marker for tracking disease progression and treatment efficacy.

Cerebral Organoids from Patients with Multiple Sclerosis Experience Decreased Glial Cell Differentiation and Myelination Induced by a PAK1 and E2F1 Dysregulation (P7-6.012)

Cerebral Organoids from Patients with Multiple Sclerosis Experience Decreased Glial Cell Differentiation and Myelination Induced by a PAK1 and E2F1 Dysregulation (P7-6.012)

Profile and burden of the family caregiver: the caring experience in multiple sclerosis. An observational study

BackgroundThe broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden.Methods200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study. Many information were collected: caregiver socio-demographic and health-related data, caregiving activities, knowledge of MS, coping strategies, mood, social support received and care recipient information. Caregiving burden was measured by the ZBI (Zarit Burden Interview). The extent to which the variables explained caregiver burden was analyzed using a hierarchical approach.Results68% of the caregivers reported a perceived burden of care (ZBI score > 20). Our results show that physical and mental related-health variables are important predictive factors of the care burden, explaining much of the observed variance (40.9%).ConclusionFamily caregivers in MS continue to make up the shortfall produce by national health and welfare systems. We highlighted the importance of good physical and mental health in decreasing perceived burden. Working to alleviate psychological distress through mechanisms focus on reducing worries and perceived burden may be a valid approach.

Disease-modifying therapies in managing disability worsening in paediatric-onset multiple sclerosis: a longitudinal analysis of global and national registries

High-efficacy disease-modifying therapies have been proven to slow disability accrual in adults with relapsing-remitting multiple sclerosis. However, their impact on disability worsening in paediatric-onset multiple sclerosis, particularly during the early phases, is not well understood. We evaluated how high-efficacy therapies influence transitions across five disability states, ranging from minimal disability to gait impairment and secondary progressive multiple sclerosis, in people with paediatric-onset multiple sclerosis. Longitudinal data were obtained from the international MSBase registry, containing data from people with multiple sclerosis from 151 centres across 41 countries, and the Italian Multiple Sclerosis and Related Disorders Register, containing data from people with multiple sclerosis from 178 Italian multiple sclerosis centres. People younger than 18 years at the onset of multiple sclerosis symptoms were included, provided they had a confirmed diagnosis of relapsing-remitting multiple sclerosis and at least four Expanded Disability Status Scale (EDSS) scores recorded within 12-month intervals. The primary outcome was the time to change in disability state: minimal disability (EDSS scores 0, 1·0, and 1·5), mild disability (EDSS scores 2·0 and 2·5), moderate disability (EDSS scores 3·0 and 3·5), gait impairment (EDSS scores ≥4·0), and clinician diagnosed secondary progressive multiple sclerosis. A multi-state model was constructed to simulate the natural course of multiple sclerosis, modelling the probabilities of both disability worsening and improvement simultaneously. The impact of high-efficacy disease-modifying therapies (alemtuzumab, cladribine, daclizumab, fingolimod, mitoxantrone, natalizumab, ocrelizumab, rituximab, or autologous haematopoietic stem cell transplantation) and low-efficacy disease-modifying therapies (dimethyl fumarate, glatiramer acetate, interferon beta, or teriflunomide), compared with no treatment, on the course of disability was assessed. Apart from recruitment, individuals with lived experience of multiple sclerosis were not involved in the design and conduct of this study. A total of 5224 people (3686 [70·6%] female and 1538 [29·4%] male) with mean age at onset of multiple sclerosis 15·24 years (SD 2·52) were included. High-efficacy therapies reduced the hazard of disability worsening across the disability states. The largest reduction (hazard ratio 0·41 [95% CI 0·31-0·53]) was observed in participants who were treated with high-efficacy therapies while in the minimal disability state, compared with those remained untreated. The benefit of high-efficacy therapies declined with increasing disability. Young people with minimal disability who received low-efficacy therapy also experienced a reduced hazard (hazard ratio 0·65 [95% CI 0·54-0·77]) of transitioning to mild disability, in contrast to those who remained untreated. Treatment of paediatric-onset relapsing-remitting multiple sclerosis with high-efficacy therapy substantially reduces the risk of reaching key disability milestones. This reduction in risk is most pronounced among young people with minimal or mild disability when treatment began. Children with relapsing-remitting multiple sclerosis should be treated early with high-efficacy therapy, before developing significant neurological impairments, to better preserve their neurological capacity. National Health and Medical Research Council, Australia; MSBase Foundation Fellowship; MS Australia Postdoctoral Fellowship.

Propulsive Force Modulation Drives Split-Belt Treadmill Adaptation in People with Multiple Sclerosis.

Most people with multiple sclerosis (PwMS) experience significant gait asymmetries between their legs during walking, leading to an increased risk of falls. Split-belt treadmill training, where the speed of each limb is controlled independently, alters each leg's stepping pattern and can improve gait symmetry in PwMS. However, the biomechanical mechanisms of this adaptation in PwMS remain poorly understood. In this study, 32 PwMS underwent a 10 min split-belt treadmill adaptation paradigm with the more affected (MA) leg moving twice as fast as the less affected (LA) leg. The most noteworthy biomechanical adaptation observed was increased peak propulsion asymmetry between the limbs. A kinematic analysis revealed that peak dorsiflexion asymmetry and the onset of plantarflexion in the MA limb were the primary contributors to the observed increases in peak propulsion. In contrast, the joints in the LA limb underwent only immediate reactive adjustments without subsequent adaptation. These findings demonstrate that modulation during gait adaptation in PwMS occurs primarily via propulsive forces and joint motions that contribute to propulsive forces. Understanding these distinct biomechanical changes during adaptation enhances our grasp of the rehabilitative impact of split-belt treadmill training, providing insights for refining therapeutic interventions aimed at improving gait symmetry.

Seeing the Invisible: A Photovoice Exploration of Living With and Managing the Invisible Symptoms of Multiple Sclerosis

In this photovoice study, we explored how people with multiple sclerosis (MS) experience living with and managing invisible symptoms in daily life. Twelve people with MS produced digital images over a 2-week period to capture their experiences of invisible symptoms. Participants then discussed their images in semistructured interviews. We thematically analyzed the interviews and developed three main themes that encompass the difficulties around conceptualizing invisible symptoms and the conflicts of legitimacy this presents for people with MS, in which the reality of their invisible symptoms is invalidated by others and sometimes for themselves. Participants navigated these issues in dynamic ways, choosing to fit their symptoms to their lives or make space for their symptoms depending on the context, often influenced by a desire to “stay invisible” or to “be seen.” We highlight clinical implications for supporting people with MS around the legitimacy conflicts they experience and how they negotiate living with invisible symptoms.

Scale development to evaluate differences between concern about falling and fear of falling: the concern and fear of falling evaluation.

Individuals with multiple sclerosis (MS) experience fear of falling (FOF), which is associated with negative health and quality-of-life consequences. Prior research has used FOF and concern about falling (CAF) interchangeably, but persons with MS report that CAF and FOF represent separate constructs that lie on a continuum. Unfortunately, no scale exists to understand the differences between CAF and FOF. Therefore, we developed a novel questionnaire, the Concern and Fear of Falling Evaluation (CAFFE), in which respondents rank their CAF and FOF on a continuum across various activities. This study aims to describe the scale development process and examine its psychometric properties. In a single online survey, MS participants responded to demographic questionnaires, indicated whether they experience CAF and FOF, and completed the CAFFE. Psychometric evaluation of the CAFFE involved internal consistency, split-half cross validation, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA). Out of 1,025 respondents, 64.6% reported CAF and 47.2% reported FOF. The EFA yielded a two-factor solution encompassing activities in open (factor 1) and closed environments (factor 2). The CFA replicated this two-factor solution and the CAFFE demonstrated excellent internal consistency (α = 0.98). The 27-item CAFFE is a highly reliable and valid measure capturing the tipping point at which point CAF moves to FOF. Future research should seek to define the tipping point from the MS community, as CAF may be an adaptive mechanism, whereas FOF may be a maladaptive behavior.

Multiple Sclerosis Progression and Relapse Activity in Children

Although up to 20% of patients with multiple sclerosis (MS) experience onset before 18 years of age, it has been suggested that people with pediatric-onset MS (POMS) are protected against disability because of greater capacity for repair. To assess the incidence of and factors associated with progression independent of relapse activity (PIRA) and relapse-associated worsening (RAW) in POMS compared with typical adult-onset MS (AOMS) and late-onset MS (LOMS). This cohort study on prospectively acquired data from the Italian MS Register was performed from June 1, 2000, to September 30, 2021. At the time of data extraction, longitudinal data from 73 564 patients from 120 MS centers were available in the register. The main outcomes included age-related cumulative incidence and adjusted hazard ratios (HRs) for PIRA and RAW and associated factors. Clinical and magnetic resonance imaging features, time receiving disease-modifying therapy (DMT), and time to first DMT. After applying the inclusion and exclusion criteria, the study assessed 16 130 patients with MS (median [IQR] age at onset, 28.7 [22.8-36.2 years]; 68.3% female). Compared with AOMS and LOMS, patients with POMS had less disability, exhibited more active disease, and were exposed to DMT for a longer period. A first 48-week-confirmed PIRA occurred in 7176 patients (44.5%): 558 patients with POMS (40.4%), 6258 patients with AOMS (44.3%), and 360 patients with LOMS (56.8%) (P < .001). Factors associated with PIRA were older age at onset (AOMS vs POMS HR, 1.42; 95% CI, 1.30-1.55; LOMS vs POMS HR, 2.98; 95% CI, 2.60-3.41; P < .001), longer disease duration (HR, 1.04; 95% CI, 1.04-1.05; P < .001), and shorter DMT exposure (HR, 0.69; 95% CI, 0.64-0.74; P < .001). The incidence of PIRA was 1.3% at 20 years of age, but it rapidly increased approximately 7 times between 21 and 30 years of age (9.0%) and nearly doubled for each age decade from 40 to 70 years (21.6% at 40 years, 39.0% at 50 years, 61.0% at 60 years, and 78.7% at 70 years). The cumulative incidence of RAW events followed a similar trend from 20 to 60 years (0.5% at 20 years, 3.5% at 30 years, 7.8% at 40 years, 14.4% at 50 years, and 24.1% at 60 years); no further increase was found at 70 years (27.7%). Delayed DMT initiation was associated with higher risk of PIRA (HR, 1.16; 95% CI, 1.00-1.34; P = .04) and RAW (HR, 1.75; 95% CI, 1.28-2.39; P = .001). PIRA can occur at any age, and although pediatric onset is not fully protective against progression, this study's findings suggest that patients with pediatric onset are less likely to exhibit PIRA over a decade of follow-up. However, these data also reinforce the benefit for DMT initiation in patients with POMS, as treatment was associated with reduced occurrence of both PIRA and RAW regardless of age at onset.

Chronotypes and their relationship with depression, anxiety, and fatigue among patients with multiple sclerosis in Vilnius, Lithuania

BackgroundApproximately half of patients with multiple sclerosis (PWMS) experience sleep disorders or changes in the circadian rhythm, that may further promote the pathogenesis of multiple sclerosis. As the prevalence of chronotypes among PWMS remains unclear, we aimed to evaluate the prevalence of chronotypes among Lithuanian PWMS; to assess the relationship of chronotypes with depression, anxiety, and fatigue symptoms; and to compare these results with those of healthy controls.MethodsWe enrolled 101 PWMS and 100 healthy controls. We included 130 (64.7%) and 71 (35.3%) women and men, respectively. The median age of all respondents was 39 [interquartile range (IQR) 20.75] years. Participants were assessed using general questionnaire, Horne-Östberg Morningness-Eveningness Questionnaire (MEQ), Hospital Anxiety and Depression Scale (HADS), and Shortened Fatigue Questionnaire (SFQ). Chronotypes were identified based on the total MEQ score.ResultsThe average MEQ scores of the PWMS and control groups were 54 (IQR 15.0) and 53.5 (IQR 13), respectively, which indicated the intermediate chronotype. There was no significant between-group difference in the prevalence of chronotypes (p = 0.893). In both groups, individuals with moderate evening and intermediate chronotypes showed higher average HADS depression scores (p = 0.022). Further, in both groups, the individuals with the evening chronotype showed the highest average HADS anxiety scores (p = 0.001). The PWMS group had a higher average SFQ score than the control group (p &amp;lt; 0.001). High SFQ scores were more common among PWMS who had the intermediate (p &amp;lt; 0.001) and morning chronotypes (p = 0.011). The fatigue level was higher among healthy individuals with the evening chronotype (p &amp;lt; 0.001).ConclusionThe most common chronotype for PWMS and healthy controls was the intermediate chronotype. Further, in both groups, higher HADS depression and anxiety scores were associated with the evening chronotype. Fatigue was more commonly found in healthy controls with the evening, and in PWMS - with intermediate and morning chronotypes.

Association between frailty and sleep quality in people living with multiple sclerosis and obesity: An observational cross-sectional study

BackgroundA majority of the people with multiple sclerosis (pwMS) experience sleep disturbances. Frailty is also common in pwMS. The geriatric literature strongly suggests that frailty is associated with worse sleep outcomes in community-dwelling older adults, but this association has yet to be explored among pwMS. This study focused on examining the association between frailty and sleep quality in pwMS. MethodsSeventy-six people with both MS and obesity (mean age: 47.6 ± 10.9 years, 81.6 % female, mean body mass index (BMI): 37.10 ± 5.5 kg/m2, mean Patient Determined Disease Steps (PDDS): 0.82 ± 1.20) were included in this cross-sectional secondary analysis. A comprehensive frailty index (FI) based on 41 health deficits from various health domains was calculated based on standardized procedures. Sleep quality was determined by the Pittsburgh Sleep Quality Index questionnaire (PSQI). ResultsOverall, 67.1 % of the participants were identified as non-frail (FI ≤ 0.25), and 32.9 % were identified as frail (FI > 0.25). A significant correlation was observed between FI scores and global PSQI scores (ρ = 0.43, p < 0.05). Cross-tabulation analyses revealed that frail participants had worse subjective sleep quality, sleep latency, habitual sleep efficiency, sleep disturbances, daytime dysfunction, and higher use of sleep medications compared to non-frail participants (p < 0.05). ConclusionsThe current study identified a significant association between frailty and sleep quality in people with both MS and obesity with minimal disability. These findings underscore the importance of untangling the relationship between frailty and sleep quality in pwMS. These results could lead to a more targeted approach for rehabilitation interventions aiming to improve frailty in MS.

Mobility and Dual Tasking in the Everyday Lives of Adults with Multiple Sclerosis: A Qualitative Exploration.

The purpose of the study was to understand how people with multiple sclerosis experience dual-tasking situations in their everyday lives. Focus groups involving a total of 11 individuals with multiple sclerosis (eight females and three males) participated in this qualitative inquiry. Participants were asked open-ended questions focused on the nature of and consequences around dual tasking when standing or walking. Reflexive thematic analysis was employed to examine the data. Three themes were generated from the data: (a)Life Is a Dual Task, (b)The Social Divide, and (c)Sacrifices for Stability. This study highlights the significance and impact of dual tasking on the lived experience of adults with multiple sclerosis, furthering the need to more fully examine this phenomenon and potentially improve fall-prevention interventions and facilitate community participation.

Barriers to and Facilitators of Adjustment Among Iranian Multiple Sclerosis Patients: A Qualitative Study.

Patients with multiple sclerosis (MS) experience various physical symptoms and psychosocial problems that disrupt their normal life, and adapting to these conditions is vital for them. Many factors that serve as facilitators of and barriers to achieving adjustment should be identified to be able to help the patients. This study was conducted to explain the experiences of patients with MS regarding the facilitators of and barriers to adjustment using conventional content analysis. The participants consisted of 18 patients, one nurse, one physician, and one patient companion, who were selected from the Multiple Sclerosis Clinic of BouAli, northern Iran, through purposive sampling. Data were collected through individual, in-depth, and semi-structured interviews and analyzed using the method recommended by Elo and Kyngäs (2008). The data analysis generated five subcategories as facilitators and five subcategories as barriers. The subcategories of facilitators included family's appropriate behavior with the patient, occupation, studying and information gathering, religious beliefs, and turning attitude into disease simplification and optimism. The subcategories of barriers were concerns about the uncertain future of the disease, physicians' poor communication and behavior, society's poor attitude, economic problems, and unsatisfactory support by the government and insurance companies. The results showed that a set of individual, environmental, and social factors serves as facilitators of or barriers to the process of adjustment to MS in patients. Gaining knowledge about these factors in congruence with the sociocultural context of the society, as derived from people's real experiences, can help healthcare staff and the family of these patients provide more efficient assistance to the patients for achieving adjustment earlier.

Understanding who benefits most from cognitive rehabilitation for multiple sclerosis: A secondary data analysis

Background: Up to 70% of people with multiple sclerosis (MS) experience cognitive difficulties. Cognitive rehabilitation is a type of therapy that helps manage cognitive problems. Objective: The Cognitive Rehabilitation for Attention and Memory in MS (CRAMMS) trial showed some evidence of effectiveness of cognitive rehabilitation in improving cognitive function, with some participants benefitting more than others. We therefore conducted a secondary analysis of the CRAMMS data to understand who benefits most. Methods: We grouped baseline data into four categories of possible predictors. We used regression models to identify specific factors/characteristics that could predict the likelihood that an individual will benefit from cognitive rehabilitation. Results: The models predicted whether a participant improved or did not improve in neuropsychological function following cognitive rehabilitation in up to 86% of participants. Results suggest that younger participants with medium to high education, diagnosed with relapsing-remitting multiple sclerosis (RRMS) and primary-progressive multiple sclerosis (PPMS) who have not experienced any recent relapses, with mild to moderate cognitive difficulties were most likely to benefit from cognitive rehabilitation. Conclusion: We can predict which participants are most likely to demonstrate significant improvements in neuropsychological function following group-based cognitive rehabilitation. Clinically, this allows us to optimise limited neuropsychology resources by offering such cognitive rehabilitation to those most likely to benefit.

International Consensus on Smoldering Disease in Multiple Sclerosis using the Delphi Method (P11-3.013)

International Consensus on Smoldering Disease in Multiple Sclerosis using the Delphi Method (P11-3.013)