The subjective wellbeing of people living with Multiple Sclerosis in Australia: insights from the Personal Wellbeing Index.

OBJECTIVES: Subjective wellbeing has been defined as an individual's personal appraisal of their quality of life. Subjective wellbeing is associated with positive health behaviours and improved coping abilities. This study aimed to investigate the subjective wellbeing of people living with multiple sclerosis (MS), using the novel Personal Wellbeing Index, and make comparisons with the general population. METHODS: Cross-sectional data was obtained from the Australian Multiple Sclerosis Longitudinal Study and the How Is Your Life Australian general population study in August-October 2020. Subjective wellbeing was measured as life satisfaction using the Personal Wellbeing Index. This instrument measures life satisfaction globally and in seven life domains, allowing the importance of domain-specific life satisfaction to be explored. Descriptive and multivariable regression analyses were conducted. RESULTS: One thousand six hundred eighty-three MS and 1,021 general population participants entered the study (mean age 52.4 and 58.6; female 79.9% and 52.4%, respectively). For people living with MS the most important life domains were standard of living and achieving in life. The domain of personal health was more influential for people living with MS (p < 0.01) than the general population. The life domains most susceptible to MS-related disability were personal health, achieving in life, and community connectedness (p < 0.01 for these domains). CONCLUSION: Personal health and achieving in life are key domains through which the subjective wellbeing of people living with MS is modified. This study recommends the development of interventions to support healthy perceptions of illness and continued employment as paramount in improving the subjective wellbeing of people living with MS.

Depressive Symptoms in Multiple Sclerosis: Links to Body Composition, Physical Activity, and Functional Ability.

BACKGROUND In patients with multiple sclerosis, depression and its associated symptoms are factors that reduce the health-related quality of life can affect the course of the disease and the patient's compliance with therapeutic recommendations, or may even increase the risk of suicide. This study aimed to determine the relationship between body composition, motor function of limbs, physical activity, and the occurrence of depressive symptoms in patients with multiple sclerosis. MATERIAL AND METHODS The study group included 110 patients - 84 women (76.4%) and 26 men (23.6%) - with multiple sclerosis and with or without depression. Disability status was assessed using the EDSS scale. Depressive symptoms were recognized based on the Beck Depression Inventory-II, while motor function was determined with the 9-Hole Peg Test and Timed 25-Foot Walk test. Accelerometers were used to evaluate physical activity of patients. Statistical analysis of collected data was performed using logistic regression. RESULTS Depressive symptoms (BDI-II score ≥14) were observed in 24.55% of the participants. MS patients with and without depression symptoms differed significantly in terms of fat mass, T25-FW, and 9-HPT-dominant hand. Multivariate regression analyses demonstrated that increased adiposity (OR=1.09; 95% CI=1.02-1.16; P=.008; and decreased motor ability of the upper limb, both dominant (OR=1.07; 95% CI=1.01-1.15; P=.043) and non-dominant one (OR=1.10 95% CI 1.01-1.18; P=.025) were associated with a higher risk of depression. The differences in physical activity and T25-FW between groups were statistically insignificant. CONCLUSIONS The severity of depression symptoms was related to higher body mass and decreased functional ability of the upper limbs in patients with MS. Thus, a detailed evaluation of the patient's upper-limb function should constitute an integral part of motor function assessment of patients with MS.

Assessment of social stigma among multiple sclerosis patients in Saudi Arabia: A cross-sectional study.

OBJECTIVES: To assess the social stigma towards multiple sclerosis in Saudi Arabia. METHODS: A descriptive cross-sectional online survey study was done in Saudi Arabia. It targets social stigma among multiple sclerosis patients in Saudi Arabia. This questionnaire was filled out by patients using Google Forms, and the questionnaire was designed to measure the demographic data and social Stigma using a validated RSS-MS scale. RESULTS: After we applied the exclusion criteria, we received 381 MS patients who completed the study questionnaire. The results of the study showed that there are regions in the Kingdom of Saudi Arabia where the societal stigma towards multiple sclerosis is high compared to other regions in the Northern region (25.5±10.0) and the lowest among Eastern region patients (17.3±7.2). The study also, showed that unmarried people have a higher stigma compared to married patients (21.0±8.3 vs. 18.9±8.0, respectively; p=.011). CONCLUSION: Our study showed the extent of societal stigma towards patients with multiple sclerosis in the Kingdom of Saudi Arabia. We recommend more psychological and social support for patients with multiple sclerosis and more volunteer campaigns for the disease.

Meta-synthesis of the motherhood-related needs of women with multiple sclerosis.

BACKGROUND: The treatment of multiple sclerosis, an autoimmune disease that predominantly affects women of reproductive age, has undergone considerable advancements. Nevertheless, their unique needs, particularly those related to motherhood, continue to be disregarded. This study aims to ascertain the needs of women diagnosed with MS about motherhood. METHODS: Using the Noblit and Hare methods, meta-synthesis research was conducted on 10 qualitative studies. The relevant studies were obtained by conducting a comprehensive search using keywords in the PubMed, Scopus, Web of Science (ISI), and ProQuest databases without any time limitations until June 2023. The CASP checklist was used to assess the quality of the articles, while the technique of Brown and Clark (2006) was utilized for data synthesis. RESULTS: Four key themes emerged from this meta-synthesis, highlighting the significance of a support system, psychoeducational counseling, knowledge promotion, and continuous, comprehensive, and unique care. CONCLUSION: Identifying the needs of women diagnosed with MS and addressing these needs concerning motherhood can enhance the quality of services rendered and enhance women's contentment with their choice to embark on motherhood. Furthermore, recognizing these needs during subsequent stages can be utilized in formulating tailored programs catering to this specific cohort of women.

Energy Associated With Dynamic Network Changes in Patients With Multiple Sclerosis and Cognitive Impairment.

BACKGROUND AND OBJECTIVES: Patients with multiple sclerosis (MS) often experience cognitive impairment, and this is related to structural disconnection and subsequent functional reorganization. It is unclear how specific patterns of functional reorganization might make it harder for cognitively impaired (CI) patients with MS to dynamically adapt how brain regions communicate, which is crucial for normal cognition. We aimed to identify dynamic functional network patterns that are relevant to cognitive impairment in MS and investigate whether these patterns can be explained by altered energy costs. METHODS: Resting-state functional and diffusion MRI was acquired in a cross-sectional design, as part of the Amsterdam MS cohort. Patients with clinically definitive MS (relapse-free) were classified as CI (≥2/7 domains Z < -2), mildly CI (MCI) (≥2/7 domains Z < -1.5), or cognitively preserved (CP) based on an expanded Brief Repeatable Battery of Neuropsychological Tests. Functional connectivity states were determined using k-means clustering of moment-to-moment cofluctuations (i.e., edge time series), and the resulting state sequence was used to characterize the frequency of transitions. Control energy of the state transitions was calculated using the structural network with network control theory. RESULTS: Imaging and cognitive data were available for 95 controls and 330 patients (disease duration: 15 years; 179 CP, 65 MCI, and 86 CI). We identified a "visual network state," "sensorimotor network state," "ventral attention network state," and "default mode network state." CI patients transitioned less frequently between connectivity states compared with CP (ß = -5.78; p = 0.038). Relative to the time spent in a state, CI patients transitioned less from a "default mode network state" to a "visual network state" (ß = -0.02; p = 0.004). The CI patients required more control energy to transition between states (ß = 0.32; p = 0.007), particularly for the same transition (ß = 0.34; p = 0.049). DISCUSSION: This study showed that it costs more energy for MS patients with cognitive impairment to dynamically change the functional network, possibly explaining why these transitions occur less frequently. In particular, transitions from a default mode network state to a visual network state were relevant for cognition in these patients. To further study the order of events leading to these network disturbances, future work should include longitudinal data across different disease stages.

Living With Multiple Sclerosis: The Rainbow of Inspiring Experiences and Resilience in the Face of the Disease.

INTRODUCTION: Multiple sclerosis (MS), a leading cause of disability in young adults worldwide, including in Iran, affects their whole life so common care is no longer effective. In this regard, context-based approaches should be considered for a holistic care delivery that accords with the patients' inputs. We aimed to explore patients' understanding of MS and their personal experiences of living with this disease. METHODS: A qualitative descriptive study was conducted. The data were collected through in-depth, semi-structured interviews with 17 patients. These patients were selected using a purposive sampling method, and the data were analyzed using a conventional content analysis approach. FINDINGS: Three main categories and nine subcategories were identified: Thunder and Lightning strike in the form of Displeasure, Social wrong beliefs, Experiences of Constraints, Interference with Life Stages and Dark Spots on the Horizon of the Future; Subtle Beam consisting of Extrinsic Light Radiation, Reflection of Individual Effort and Formation of a Rainbow by Resilience and Hope for a Bright Future. CONCLUSION: By offering multidimensional support, patients reported a shift from fear to a vibrant life. Although research often focuses on the negative aspects of MS, this study recognizes both positive and negative aspects. These findings can contribute to future interventional research. PATIENT OR PUBLIC CONTRIBUTION: During the explanation of research goals and consent acquisition, participants were reminded that sharing their experiences could provide valuable insights benefiting others coping with or at risk of the same disease. Additionally, during data analysis, codes extracted were reviewed and improved with active participant involvement.

Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis.

INTRODUCTION: People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being. METHODS: We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz. RESULTS: Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations. CONCLUSIONS: This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment. PATIENT OR PUBLIC CONTRIBUTION: This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices. TRIAL REGISTRATION: German Clinical Trials Register number: DRKS00025532.

Neuropsychological Manifestations of Multiple Sclerosis.

This review article summarizes the literature on the cognitive impairment seen amongst people with multiple sclerosis (MS) and how that impairment can impact not only their lives but also how their care needs to be managed. Recommendations regarding screening and monitoring of cognitive issues are reviewed, as well as how common comorbidities can further impact cognition. The current literature with respect to treatment options is also summarized. Finally, the article reviews the literature on some special populations living with MS.

Sleep and cognitive outcomes in multiple sclerosis; a systematic review.

BACKGROUND: Multiple sclerosis (MS) is a disabling disease of the central nervous system. People living with MS often have co-existing sleep disorders and cognitive dysfunction. The objective of this study was to scrutinize the relationship between cognitive outcomes and sleep conditions in MS. METHODS: This study followed the Joanna Briggs Institute's (JBI) and PRISMA guidelines. PubMed, Scopus, Embase, and Web of Science databases were searched and original studies delineating the relationship between sleep status and cognitive findings in MS patients| were included. The risk of bias was assessed using the JBI critical appraisal tools. RESULTS: In the final review, out of 1635 screened records, 35 studies with 5321 participants were included. Pittsburgh Sleep Quality Index (PSQI), Epworth Sleepiness Scale (ESS), and polysomnography were the most common assessment tools for evaluation of sleep condition, and cognitive evaluations were conducted using the tests including Paced Auditory Serial Addition Test (PASAT), California Verbal Learning Test (CVLT), Symbol Digit Modalities Test (SDMT) and Brief Visuospatial Memory Test (BVMT). Assessing the quality of studies showed no significant bias in most of the included articles. A link between sleep condition and cognitive abilities was suggested in the literature, especially with objective measurement of sleep condition; however, current evidence did not support a substantial association between self-reported sleep quality and processing speed and working memory in patients with MS. DISCUSSION: Evidence proposes sleep is an independent factor associated with cognitive outcomes in MS. Given the limitations of the evidence such as the lack of well-designed prospective studies, these findings need to be interpreted with caution.

Stigma and health outcomes in multiple sclerosis: a systematic review.

BACKGROUND: Stigma is increasingly recognised as contributing to disability in MS. This systematic review aimed to answer the following question: To what extent is stigma associated with psychological and physical health outcomes in MS? METHODS: The inclusion criteria were: scientific publication of original quantitative research in adults with MS and/or Clinically Isolated Syndrome; outcome measures including a measurement of stigma and psychological and/or physical health; peer reviewed articles in the English language. Pubmed, PsycINFO and Science Direct were searched in November 2023. The Joanna Briggs Institute Critical Appraisal Tool was used to assess the methodological quality and risk of bias in all of the identified studies. The following data was extracted: (1) author and publication year, (2) country, (3) design, (4) sample size and demographics, (5) stigma measure, (6) psychological and/or physical health outcomes, 8) key findings. RESULTS: 18 Studies were identified, reporting in total 22,021 adult participants with multiple sclerosis, with individual sample sizes ranging from 33 to 6,670. The review consistently identified stigma to be significantly associated with adverse psychological and physical health outcomes in all 18 identified studies. Over half of all identified studies investigated depression and stigma and over half investigated quality of life and stigma, and a significant association was demonstrated for both of these variables with stigma in all of these studies. DISCUSSION: Limitations are that most studies were Western with primarily white participants. Only variables studied could be reported and therefore only a selective perspective of stigma in MS could be explored. A meta-analysis was not feasible, due to the variety of stigma definitions and measures employed. A model of stigma in MS is presented and possible interventions to manage stigma in MS are discussed. A need for international action to develop a consensus measure of MS stigma and determine the trajectory and causal dynamics of MS stigma is highlighted.

Repeated prefrontal tDCS for improving mental health and cognitive deficits in multiple sclerosis: a randomized, double-blind, parallel-group study.

BACKGROUND: Multiple Sclerosis (MS) is an autoimmune disease associated with physical disability, psychological impairment, and cognitive dysfunctions. Consequently, the disease burden is substantial, and treatment choices are limited. In this randomized, double-blind study, we conducted repeated prefrontal electrical stimulation in 40 patients with MS to evaluate mental health variables (quality of life, sleep difficulties, psychological distress) and cognitive dysfunctions (psychomotor speed, working memory, attention/vigilance), marking it as the third largest sample size tDCS research conducted in MS to date. METHODS: The patients were randomly assigned (block randomization method) to two groups of sham (n = 20), or 1.5-mA (n = 20) transcranial direct current stimulation (tDCS) targeting the left dorsolateral prefrontal cortex (F3) and right frontopolar cortex (Fp2) with anodal and cathodal stimulation respectively (electrode size: 25 cm2). The treatment included 10 sessions of 20 min of stimulation delivered every other day. Outcome measures were MS quality of life, sleep quality, psychological distress, and performance on a neuropsychological test battery dedicated to cognitive dysfunctions in MS (psychomotor speed, working memory, and attention). All outcome measures were evaluated at the pre-intervention and post-intervention assessments. Both patients and technicians delivering the stimulation were unaware of the type of stimulation being used. RESULTS: Repeated prefrontal real tDCS significantly improved quality of life and reduced sleep difficulties and psychological distress compared to the sham group. It, furthermore, improved psychomotor speed, attention, and vigilance compared to the sham protocol. Improvement in mental health outcome variables and cognitive outperformance were interrelated and could predict each other. CONCLUSIONS: Repeated prefrontal and frontopolar tDCS ameliorates secondary clinical symptoms related to mental health and results in beneficial cognitive effects in patients with MS. These results support applying prefrontal tDCS in larger trials for improving mental health and cognitive dysfunctions in MS. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT06401928.

Barriers to the health and well-being of women with multiple sclerosis in Southwestern Ontario, Canada.

PURPOSE: This study explores the lived experiences of women living with multiple sclerosis (MS) and identifies barriers to their optimal health and well-being. METHODOLOGY: Using van Manen's interpretative phenomenologic analysis, the researchers conducted semistructured interviews with 23 women diagnosed with MS in Southwestern Ontario, Canada. Data were analyzed using NVivo 12 software, and themes were validated through member checking. RESULTS: The study revealed a key theme of "obstacles for women with MS" and subthemes related to barriers to physical, mental, and social well-being. Participants reported experiencing feelings of health despite their MS diagnosis but identified various constraints on their optimal health and well-being, including challenges with employment, financial support, and housing security. CONCLUSION: The findings highlight the need for healthcare professionals to advocate for equitable treatments, medication, and accessibility supports for women with MS, as well as for policies that address disability income support and affordable housing. Further research is recommended to explore power imbalances experienced by women with MS in precarious employment situations or living with episodic disabilities.

PSYCHOTHERAPEUTICAL FEATURES OF PERSONS WITH MULTIPLE SCLEROSIS AND HEPATOCEREBRAL DEGENERATION.

Physiological process of aging causes a slight deterioration in memorization, learning, and the speed of cognitive processes. There is often a big gap between established standards, norms that work for mass and individual cases, for which standards are no more than guidelines, not prescriptions and dementia could be caused by many factors, the most important of which are degenerative, vascular, and toxic. Multiple sclerosis (MS) is the commonest non-traumatic disabling disease to affect young adults. Wilson's disease (WD) is an uncommon hereditary disorder caused by a deficiency in the ATP7B transporter. All of the above realized in the aim of our work: performing comprehensive clinical and laboratory examination of patients with multiple sclerosis and patients with Wilson's disease in order to study the problem of neurodegenerative diseases and their prevention. MATERIALS AND METHODS: The "Mini Mental Status Exam" scale was used for the screening assessment of the state of cognitive functions and the study of the level of intellectual productivity of patients. To determine the verbal memory, the method: "memorizing 10 words" was used, and the Derogatis SCl-90-P method was used to study the personality and emotional sphere. Psychodiagnostic examination was performed for 111 patients with MS and 33 patients with WD. RESULTS: Сognitive disorders were found in less than half of the patients (44.9%) in young patients with multiple sclerosis, whereas in the older age group, almost all patients (91.2%) had various cognitive disorders. Violation of verbal memory, of varying degrees of severity, was found in 69.1% of patients with multiple sclerosis. More than half of the patients with Wilson's disease (66.7%) had impaired productivity of cognitive functions of various degrees of severity. Identified violations were noted in 27.3% of patients (10 patients), among them 7 were aged 40 years or older and had not received pathogenetic treatment for a long time. Violations of mental functions of various nature and severity were found in 78.8% patients with Wilson's disease. They are characterized by dynamic and voluntary-regulatory thinking disorders, such as exhaustion of mental capacity (88.0%), a decrease in its speed characteristics (39.4%) and general productivity, as well as inertia (48.5%), impulsiveness (27.3%) of mental processes. Decrease in criticality of thinking was noted in 33.3% of patients. CONCLUSIONS: The structures that take participation in cognitive functions of the brain are always involved (sooner or later) in the pathogenetic process in patients with multiple sclerosis and hepatocerebral degeneration, that leads to the development of their defects. Therefore, for the treatment of these patients, a comprehensive, pathogenetically justified and personal fixed therapy is necessary. The development of palliative therapy, which will prevent the transformation of cognitive disorders into dementia, may become a prospect for further research.

A taxonomy of cognitive phenotypes in Multiple Sclerosis: a 1-year longitudinal study.

As meaningful measure of cognitive impairment (CI), cognitive phenotypes provide an avenue for symptom management and individualized rehabilitation. Since CI is highly variable in severity and progression, monitoring cognitive phenotypes over time may be useful to identify trajectory of cognitive decline in Multiple Sclerosis (MS). Based on cognitive and mood information from patient-reported outcomes (PROs) and clinician-assessed outcomes (CAOs), four cognitive subgroups of people with MS (PwMS) were identified: phenotype 1 (44.5%) showed a preserved cognitive profile; phenotype 2 (22.8%) had a mild-cognitive impairment profile with attention difficulties; phenotype 3 (24.3%) included people with marked difficulties in visuo-executive, attention, language, memory and information processing speed; lastly, phenotype 4 (8.4%) grouped individuals with a multi-domain impairment profile (visuo-executive, attention, language, memory, orientation, information processing speed and mood disorders). Although some fluctuations occurred considering the rate of impairment, cognitive phenotypes did not substantially vary at follow up in terms of type and number of impairments, suggesting that 1 year is a relatively brief temporal window to observe considerable changes. Our results corroborate that investigating cognitive phenotypes and their stability over time would provide valuable information regarding CI and, in addition, increase clinical importance of PROs and CAOs and their uptake in decision-making and individualized treatment planning for PwMS.

Subjective Well-Being, Positive Affect, Life Satisfaction, and Happiness With Multiple Sclerosis: A Scoping Review of the Literature.

PURPOSE: People with multiple sclerosis (MS) may face challenges maintaining their subjective well-being, life satisfaction, happiness, and positive emotions. This scoping review's purpose was to summarize studies on these positive psychological constructs among people with MS. METHODS: Observational and interventional studies that included measures of subjective well-being, life satisfaction, happiness, or positive affect were identified. Variables associated with these constructs were classified using the International Classification of Functioning, Disability and Health (ICF). RESULTS: The review included 22 observational and 10 interventional studies. Variables were categorized into each of the ICF domains. Cognitive behavior therapy was the most common intervention, with content and dosing varying widely. CLINICAL RELEVANCE: Subjective well-being, life satisfaction, happiness, and positive affect are crucial components of community and individual health. The findings of this scoping review highlight the complex interplay between function, personal factors, and environmental conditions in influencing positive psychological constructs. Given the limited evidence, rehabilitation nurses should leverage their skills in delivering holistic care and adopt data-driven approaches to integrate positive psychological strategies into care plans. CONCLUSION: Further research is needed to measure and compare interventions aimed at improving these constructs and to examine the influence of personal and environmental factors among diverse MS populations.

Italian Version of the mHealth App Usability Questionnaire (Ita-MAUQ): Translation and Validation Study in People With Multiple Sclerosis.

Background: Telemedicine and mobile health (mHealth) apps have emerged as powerful tools in health care, offering convenient access to services and empowering participants in managing their health. Among populations with chronic and progressive disease such as multiple sclerosis (MS), mHealth apps hold promise for enhancing self-management and care. To be used in clinical practice, the validity and usability of mHealth tools should be tested. The most commonly used method for assessing the usability of electronic technologies are questionnaires. Objective: This study aimed to translate and validate the English version of the mHealth App Usability Questionnaire into Italian (ita-MAUQ) in a sample of people with MS. Methods: The 18-item mHealth App Usability Questionnaire was forward- and back-translated from English into Italian by an expert panel, following scientific guidelines for translation and cross-cultural adaptation. The ita-MAUQ (patient version for stand-alone apps) comprises 3 subscales, which are ease of use, interface and satisfaction, and usefulness. After interacting with DIGICOG-MS (Digital Assessment of Cognitive Impairment in Multiple Sclerosis), a novel mHealth app for cognitive self-assessment in MS, people completed the ita-MAUQ and the System Usability Scale, included to test construct validity of the translated questionnaire. Confirmatory factor analysis, internal consistency, test-retest reliability, and construct validity were assessed. Known-groups validity was examined based on disability levels as indicated by the Expanded Disability Status Scale (EDSS) score and gender. Results: In total, 116 people with MS (female n=74; mean age 47.2, SD 14 years; mean EDSS 3.32, SD 1.72) were enrolled. The ita-MAUQ demonstrated acceptable model fit, good internal consistency (Cronbach α=0.92), and moderate test-retest reliability (intraclass coefficient correlation 0.84). Spearman coefficients revealed significant correlations between the ita-MAUQ total score; the ease of use (5 items), interface and satisfaction (7 items), and usefulness subscales; and the System Usability Scale (all P values <.05). Known-group analysis found no difference between people with MS with mild and moderate EDSS (all P values >.05), suggesting that ambulation ability, mainly detected by the EDSS, did not affect the ita-MAUQ scores. Interestingly, a statistical difference between female and male participants concerning the ease of use ita-MAUQ subscale was found (P=.02). Conclusions: The ita-MAUQ demonstrated high reliability and validity and it might be used to evaluate the usability, utility, and acceptability of mHealth apps in people with MS.

Effectiveness of a digital lifestyle management intervention (levidex) to improve quality of life in people with multiple sclerosis: results of a randomized controlled trial.

BACKGROUND: Multiple Sclerosis (MS) is a chronic inflammatory neurodegenerative disease with diverse symptomatology, significantly impacting patients' quality of life (QoL). While pharmacological therapies focus primarily on reducing inflammation and relapse rates, non-pharmacological interventions, including digital health applications, have shown promise in improving QoL among persons with MS (PwMS). Pilot studies had shown the feasibility and acceptability of levidex, a digital health application based on cognitive behavioral therapy (CBT) principles, a broad set of behavior change techniques, and relevant lifestyle-change advice. This randomized controlled trial aimed to examine the effects of levidex on MS-related QoL over 6 months. METHODS: Participants who were diagnosed with MS for at least one year were recruited via the internet in Germany, using a secure survey software platform, and were randomly assigned to the intervention group (IG), in which they received standard care + levidex, or an active control group (CG), in which they received standard care and were offered web-adapted material on the topic of lifestyle change from the German Multiple Sclerosis Society (DMSG). The primary outcome was MS-related QoL after 6 months, measured by the Hamburg Quality of Life Questionnaire in MS (HAQUAMS); secondary outcomes included QoL subscales, sick days, and health behavior, among others. Analyses of Covariance (ANCOVA) were used to examine intervention effects at 6 months. Participants were recruited between November 2020 and February 2022. RESULTS: A total of 421 adult participants (mean age: 47.5, 78.1% women) were included and randomized (IG, n = 195, CG, n = 226). After 6 months, the IG exhibited significantly higher MS-related QoL, compared to the CG (total score HAQUAMS, adjusted group mean difference = -0.14, 95% CI: [-0.22, -0.06], p = 0.001; Cohen's d = 0.23), with significant effects also observed on the cognitive and mood subscales. At 6 months, IG participants also reported significantly fewer sick days (median = 2 days in IG vs. 6 days in CG; W = 3939, p = 0.012) and significantly higher levels of daily activities, as measured by the Frenchay Activity Index, adjusted group mean difference = 1.37, 95% CI = [0.33, 2.40], p = 0.010; Cohen's d = 0.16. Safety analyses showed no adverse events and good satisfaction. CONCLUSIONS: Compared to the control group, levidex facilitated clinically relevant improvements in MS-related QoL, reduced sick days, and enhanced activity in PwMS over 6 months. These findings suggest that levidex can serve as an effective non-pharmacological adjunctive treatment element to standard care and could help improve QoL among PwMS. TRIAL REGISTRATION: Registered on 22.09.2020 at the German Clinical Trials Register DRKS00023023.

Social determinants of health on attitudes toward childbearing among women with multiple sclerosis: A cross-sectional study.

BACKGROUND: Pregnancy and motherhood are very valuable but challenging for women with multiple sclerosis (MS). Given that there are limited studies in this field, this study aimed to determine the social determinants of health on attitudes toward childbearing among women with MS. METHODS: We conducted a cross-sectional study on 206 women with MS in Alborz province, Iran, from February to June 2023 using convenience sampling. The data were collected using the questionnaire, and a linear regression analysis was applied. RESULTS: The mean age of the participants was 36.80 ± 6.50 years. Participants' Attitudes toward Fertility and Childbearing (PAFC) had a positive significant association with social support (B = .10, SE = .04, p = .023) and a significant negative association with the total score of depression, anxiety, and stress scale (B = -.13, SE = .06, p = .047) and depression (B = -.40, SE = .18, p = .023). However, the association between anxiety (B = -.25, SE = .20, p = .211), stress (B = -.36, SE = .18, p = .050), MS severity (B = .04, SE = .30, p = .890), and socioeconomic status scale (SES) (B = -.08, SE = .32, p = .806) was nonsignificant with PAFC. CONCLUSION: Our results showed that factors, including social support and mental health especially depression, can affect PAFC in women with MS. Therefore, it is necessary to determine specific strategies for policymakers to help MS patients manage pregnancy and motherhood.

Optimizing Detection and Prediction of Cognitive Function in Multiple Sclerosis With Ambulatory Cognitive Tests: Protocol for the Longitudinal Observational CogDetect-MS Study.

BACKGROUND: Cognitive dysfunction is a common problem in multiple sclerosis (MS). Progress toward understanding and treating cognitive dysfunction is thwarted by the limitations of traditional cognitive tests, which demonstrate poor sensitivity and ecological validity. Ambulatory methods of assessing cognitive function in the lived environment may improve the detection of subtle changes in cognitive function and the identification of predictors of cognitive changes and downstream effects of cognitive change on other functional domains. OBJECTIVE: This paper describes the study design and protocol for the Optimizing Detection and Prediction of Cognitive Function in Multiple Sclerosis (CogDetect-MS) study, a 2-year longitudinal observational study designed to examine short- and long-term changes in cognition, predictors of cognitive change, and effects of cognitive change on social and physical function in MS. METHODS: Participants-ambulatory adults with medically documented MS-are assessed over the course of 2 years on an annual basis (3 assessments: T1, T2, and T3). A comprehensive survey battery, in-laboratory cognitive and physical performance tests, and 14 days of ambulatory data collection are completed at each annual assessment. The 14-day ambulatory data collection includes continuous wrist-worn accelerometry (to measure daytime activity and sleep); ecological momentary assessments (real-time self-report) of somatic symptoms, mood, and contextual factors; and 2 brief, validated cognitive tests, administered by smartphone app 4 times per day. Our aim was to recruit 250 participants. To ensure standard test protocol administration, all examiners passed a rigorous examiner certification process. Planned analyses include (1) nonparametric 2-tailed t tests to compare in-person to ambulatory cognitive test scores; (2) mixed effects models to examine cognitive changes over time; (3) mixed effects multilevel models to evaluate whether ambulatory measures of physical activity, sleep, fatigue, pain, mood, and stress predict changes in objective or subjective measures of cognitive functioning; and (4) mixed effects multilevel models to examine whether ambulatory measures of cognitive functioning predict social and physical functioning over short (within-day) and long (over years) time frames. RESULTS: The study was funded in August 2021 and approved by the University of Michigan Medical Institutional Review Board on January 27, 2022. A total of 274 adults with MS (first participant enrolled on May 12, 2022) have been recruited and provided T1 data. Follow-up data collection will continue through March 2026. CONCLUSIONS: Results from the CogDetect-MS study will shed new light on the temporal dynamics of cognitive function, somatic and mood symptoms, sleep, physical activity, and physical and social function. These insights have the potential to improve our understanding of changes in cognitive function in MS and enable us to generate new interventions to maintain or improve cognitive function in those with MS. TRIAL REGISTRATION: ClinicalTrials.gov NCT05252195; https://clinicaltrials.gov/study/NCT05252195. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/59876.