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• Bladder problems affect well-being in patients with multiple sclerosis. • Patients report wanting help with bladder management, emphasizing an unmet need. • Attempting self-management instead of receiving medical care affects well-being. • Results show real-life patient insights on bladder problems in multiple sclerosis. • More awareness of the impact on bladder problems in multiple sclerosis is needed. Persons with multiple sclerosis (pwMS) frequently suffer from bladder problems that are not identified and managed optimally, reducing quality of life and increasing risk of health consequences. This study aimed to investigate associations between bladder problems and well-being of pwMS. The study included 1872 pwMS from France, Germany, Italy, and the UK self-reporting on demographics, MS status, bladder problems and management, and well-being. Logistic regression analyses were performed to investigate associations with self-reported well-being. Population mean age was 51 years and 79 % were women. Among pwMS, 55 % reported bladder problems indicating overactive bladder (OAB), and 40 % reported self-experienced urinary retention. Self-management of bladder problems was reported by 32 %, 33 % were yet to have problem resolution, and 45 % reported a wish to receive bladder management help. Additionally, 35 % of pwMS reported that bladder problem onset preceded awareness of a link to MS. OAB, problem self-management, and urinary complications were significantly associated with lower well-being. Bladder problems affect pwMS across disease subtypes and many attempt self-management. Consequently, pwMS with bladder problems are more likely to experience lower well-being, suggesting an unmet need. Raising awareness of the link between bladder problems and well-being could benefit pwMS living with bladder problems. [ABSTRACT FROM AUTHOR]

Lower urinary tract dysfunction impacts quality of life of people with MS; often, symptoms are 'lived with' or deprioritised by healthcare providers (HCPs). Consequently, patients must be given the skills they need to become confident in managing their illness and enhance their involvement in the process. To develop and validate a self-assessment tool to help people with MS become more aware of their bladder symptoms and prompt contact with their HCP to facilitate timely management and specialist referral, if required. The 'MS bladder check tool' was developed by a multidisciplinary panel of specialist advisors. Consensus meetings and pilot testing were conducted to design and evolve the tool into a series of nine questions, using population-appropriate language, and covering all aspects of bladder dysfunction in MS. The tool was then validated by an international, multidisciplinary team of experts. Validity was rated 'excellent' for all questions indicating that the MS bladder check tool is an appropriate method of highlighting bladder problems in people with MS. The MS bladder check tool is simple, easy-to-use, and empowers patients to take charge of their urinary tract health, aiming to improve the management of MS and, ultimately, patient quality of life. [ABSTRACT FROM AUTHOR]

Highlights • Nineteen questionnaires from European MS registries were analysed. • Aim and focus as well as number of patients and inclusion criteria vary considerably. • Most of the MS registries collect data within common general categories. • There are more pronounced differences regarding specific subcategories. [ABSTRACT FROM AUTHOR]

• Gait analysis can detect gait impairments in patients with multiple sclerosis. • Gait parameters differ in patients with multiple sclerosis and healthy controls. • Fast speed is more suitable to detect differences than self-selected speed. • Gait parameters highly correlate to the Expanded Disability Status Scale. • Cerebellar and pyramidal disability can be reflected by gait parameters. Gait deficits are common in multiple sclerosis (MS) and contribute to disability but may not be easily detected in the early stages of the disease. We investigated whether sensor-based gait analysis is able to detect gait impairments in patients with MS (PwMS). A foot-worn sensor-based gait analysis system was used in 102 PwMS and 22 healthy controls (HC) that were asked to perform the 25-foot walking test (25FWT) two times in a self-selected speed (25FWT_pref), followed by two times in a speed as fast as possible (25FWT_fast). The Multiple Sclerosis Walking Scale (MSWS-12) was used as a subjective measure of patient mobility. Patients were divided into EDSS and functional system subgroups. Datasets between two consecutive measurements (test-retest-reliability) were highly correlated in all analysed mean gait parameters (e.g. 25FWT_fast: stride length r = 0.955, gait speed r = 0.969) Subgroup analysis between HC and PwMS with lower (EDSS≤3.5) and higher (EDSS 4.0–7.0) disability showed significant differences in mean stride length, gait speed, toe off angle, stance time and swing time (e.g. stride length of EDSS subgroups 25FWT_fast p ≤ 0.001, 25FWT_pref p = 0.003). The differences between EDSS subgroups were more pronounced in fast than in self-selected gait speed (e.g. stride length 25FWT_fast 33.6 cm vs. 25FWT_pref 16.3 cm). Stride length (25FWT_fast) highly correlated to EDSS (r =-0.583) and MSWS-12 (r =-0.668). We observed significant differences between HC and PwMS with (FS 0–1) and without (FS≥2) pyramidal or cerebellar disability (e.g. gait speed of FS subgroups p ≤ 0.001). Sensor-based gait analysis objectively supports the clinical assessment of gait abnormalities even in the lower stages of MS, especially when walking with fast speed. Stride length and gait speed where identified as the most clinically relevant gait measures. Thus, it may be used to support the assessment of PwMS with gait impairment in the future, e.g. for more objective classification of disability. Its role in home-monitoring scenarios need to be evaluated in further studies. [ABSTRACT FROM AUTHOR]

• Cognitive impairment and psychological problems are common symptoms in MS • Neuropsychological treatment can improve perceived as well as objective cognitive and psychological impairment in the short term • More specific approaches are needed to sustain Improvements over time : Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system of potential autoimmune origin that is frequently associated with neuropsychiatric symptoms and cognitive deficits, as well as with fatigue, stress and psychosocial burden. In the present controlled multi-centre trial we investigated whether two specific neuropsychological interventions (1. metacognitive training (MaTiMS); 2. computerized working memory training (BrainStim) in combination with MaTiMS) applied as add-on therapies to real life standard rehabilitation lead to increased benefit in self-perceived cognitive deficits (the primary outcome) in MS patients compared to standard rehab. : 288 adult persons in three German rehab centers with a confirmed diagnosis of MS were sequentially allocated to one of the three intervention groups. 249 (87%) participants completed the post assessment and 187 (63%) the online survey after 12 months. Perceived cognitive deficits, mood, fatigue, coping, and activity were evaluated by self-reports and neuropsychological tests at baseline and 4 weeks postintervention. All self-reports were additionally administered digitally at three, six, and twelve months from baseline. : We could not show differential effects on the primary outcome between the intervention groups and the control group (p =.369, p =.934). Immediately after each intervention we could show beneficial time effects in all three groups on self-perceived cognitive deficits as well as on most of the other outcomes. The reported effects were however not sustained at 6 months follow-up. : Our findings could not show an additional effect of specific cognitive training on cognitive deficit perception in MS. However, findings indicate that MS rehabilitation may improve patient reported outcomes in the short term. They also underline the need for concepts to maintain rehabilitation gains when patients return back home. [ABSTRACT FROM AUTHOR]

• Fatigue in multiple sclerosis can be assessed using long six-minute walking test. • Unobtrusive foot worn sensors can assess fatigue in multiple sclerosis. • State fatigue can be assessed from shortened gait tests. • Shortened gait tests may substitute exhausting six-minute walking test. Multiple sclerosis (MS) is a chronic autoimmune inflammatory disease of the central nervous system, affecting more than 2.3 million people worldwide. Fatigue is among the most common symptoms in MS, resulting in reduced mobility and quality of life. The six-minute walking test (6MWT) is commonly used as a measure of fatigability for the assessment of state fatigue throughout treatment or rehabilitation programs. This 'gold standard' test is time-consuming and can be difficult and exhausting for some patients with high levels of disability or high rates of fatigue. Can short inertial sensor-based gait tests assess perceived state fatigue in MS patients? Sixty-five MS patients equipped with one sensor on each foot performed the 6 min walk test (6MWT) and the 25-foot walk (25FW, at both preferred and fastest speed). Perceived state fatigue was measured after each minute of the 6MWT, using the Borg rating. The highest of these ratings served as a measure of overall perceived state fatigue. Stride-wise spatio-temporal gait parameters were extracted from the 25FW and from the first minute, first 2 min, and first 4 min of the 6MWT. Principal component analysis was performed. Perceived state fatigue was predicted in a regression analysis, using the principal components of gait parameters as predictors. Statistical tests evaluated differences in performance between the full 6MWT, the shortened 6MWT, and the 25FW. A mean absolute error of less than 2 points on the Borg rating was obtained using the shortened 6MWT and the 25FW. There were no significant differences between the prediction accuracy of the full 6MWT and that of the shortened gait tests. It is possible to use shortened gait tests when evaluating perceived state fatigue in MS patients using inertial sensors. Substituting them for long gait tests may reduce the burden of the testing on both patients and clinicians. Further, the approach taken here may prompt future work to explore the use of short bouts of real-world walking with unobtrusive inertial sensors for state fatigue assessment. [ABSTRACT FROM AUTHOR]

• Of 1,513 SPMS patients, 30.9% had an active and 69.1% had an inactive MS course. • Further 2,750 SPMS patients could not be classified due to missing MRI data. • Low MRI frequencies are common in people of high age and of long disease duration. • Annual or at least regular MRI assessments are not done for a significant subgroup. • Active and inactive SPMS patients were similar in symptomatology, care and therapy. The tailored immunomodulatory treatment strategy for secondary progressive multiple sclerosis (SPMS) depends on disease activity. To assess the real-world situation in monitoring disease activity in SPMS patients and to identify associations of resulting subgroups with demographics, symptomatology, and therapy This study included 4,263 SPMS patients from the German MS register (GMSR). For the classification into 'active' and 'inactive' according to relapse activity and MRI findings during the year prior to the latest clinical visit, we used the following definitions: active - gadolinium enhancing (Gd+)/new T2 lesions or ≥1 relapse, inactive - neither Gd+/new T2 lesions nor relapses. The active, inactive, and unclassifiable patients were compared in terms of clinical data, socio-demographics, symptomatology, healthcare, and DMT. Classification was possible for 1,513 (35.5%) SPMS patients, with 467 classified as active and 1,046 as inactive. For the classification, MRI data was available for 33.2% of the 4,263 patients. Higher MRI frequencies were observed for younger patients (OR 1.22 [1.12,1.33] per 10 years) with short disease duration (OR 1.19 [1.09, 1.30] per 10 years) (p < 0.001). MRI coverage was low, especially in elderly SPMS patients. Roughly one third of the SPMS patients presented markers of disease activity in the last year. Overall, the clinical differences (concerning symptomatology and care) between patients with active and inactive SPMS were small. [ABSTRACT FROM AUTHOR]

• More than half of all patients fulfilled the traditional definition of benign MS. • After 30 years' disease duration this share is still approximately 30%. • Female sex, early and relapsing onset were associated with a benign course. • A composite definition of 'truly benign' may expel EDSS >1, symptoms & unemployment. • Criteria of truly benign was fulfilled only by 13% of the original benign patients. Multiple sclerosis (MS) is a neuroinflammatory and neurodegenerative disease with an unpredictable course that has a broad clinical spectrum and progresses over time. If a person with MS (PwMS) shows overall mild to moderate disability even after a long duration of disease, the term benign MS (BMS) is used. However, there is currently no generally accepted definition of BMS. Most definitions are based on EDSS in connection with disease duration, i.e. EDSS ≤3.0 after 15 years' disease duration. The question arises whether focusing on EDSS alone is adequate for classifying the disease course taking into account that 'hidden' or 'soft' symptoms are not sufficiently covered by this instrument. The aims of the study are to assess the prevalence of BMS in one of the largest patient cohorts, to describe the prevalence of patients without disabilities and to assess the further disability progression of these patients over another 15 years. Based on data exported from the German MS Registry, PwMS with a disease duration of 15 years or more were included in the analyses. PwMS were divided into BMS (EDSS ≤3.0) or non-benign (NBMS, EDSS >3.0). Out of 31,824 PwMS included in the German MS Register, we identified 10,874 patients with a disease duration ≥15 years of whom 4,511 (42%) showed an EDSS ≤3.0 fulfilling the criterion of benign MS. In the subgroup with EDSS measured exactly at 15 years' disease duration, the proportion was 54%. This proportion decreased continuously with increasing disease duration and fell to 30% after 30 years. Female sex (hazard ratio [HR]: 0.84) was associated with BMS, while a progressive (HR: 2.09) and late disease onset (HR: 1.29) were associated with NBMS (p <0.001). With a more rigorous definition of BMS (EDSS ≤1.0, absence of disability, and active employment), only 580 (13%) of the initial BMS remained 'benign'. Our data propose an alternative definition (EDSS ≤1.0, absence from any disability, and the ability to work after 15 years of disease duration) which might truly reflect BMS. [ABSTRACT FROM AUTHOR]

• All patients with MS should be screened for NLUTD • A patient questionnaire, PVR measurement, and bladder diary are mandatory • Red flags are high PVR, high micturition frequency, UTI-rate, and incontinence • Uroflowmetry can select asymptomatic patients with abnormal urodynamic Neurogenic lower urinary tract dysfunction (NULTD) is common in patients with multiple sclerosis (MS); nevertheless, it is often underestimated, underdiagnosed, and undertreated due to patients' sense of shame, variability of symptoms, as well as lack of communication between neurologists and urologists, despite the availability of several guidelines based on scientific evidence and expert opinion. This study was conducted to develop an easy-to-perform algorithm for diagnosing neurogenic lower urinary tract disease in patients with MS for daily neurological and urological routine, including the identification of red flags. In consensus group meetings, interprofessional experts (neurologists, urologists, neurourologists, nurses, nurse practitioners, occupational therapists, physical therapists as well as representatives of national MS centers, self-care groups, social care, residential care, and health-aid-providers) developed a diagnostic algorithm to detect NULTD in patients with MS. Subsequently, the group evaluated the algorithm in 121 patients with MS using micturition diary, post-void residual volume, uroflowmetry, and urodynamic studies. Statistical analysis was conducted on the basis of logistic regression models to compare patients with normal and abnormal urodynamic examinations. Differentiation was performed using selected diagnostic parameters as well as standard performance measures for binary classifiers to assess prognostic quality. The following four parameters allowed to diagnose NLUTD in patients with MS: post-void residual urine volume, rate of urinary tract infections during the past 6 months, micturition frequency, and incontinence. According to statistical analysis, the following thresholds could be defined: post-void residual volume (PVR) ≥70 mL (Odds Ratio (OR) = 1.24; 95% CI:[1.07,1.62]), urinary tract infection (UTI) rate - none in 6 months (OR = 2.03; 95% CI:[1.04,6.68]), and micturition frequency >13/day, standardized on 2000 mL urine excretion (OR = 1.24; 95% CI:[1.07,1.49]). Uroflowmetry served as a further predictor of urodynamically measurable urinary bladder dysfunction (OR = 4.80; 95% CI: [1.41, 19.21]). Interestingly, patients without any complaints of NLUTD had an abnormal urodynamic examination in >50% of the cases. The entire algorithm has a sensitivity of 95%. All patients with MS should undergo a basic examination to detect NLUTDs. Within the algorithm developed in this study, four easy-to-collect parameters may reveal NLUTD in patients with MS. [ABSTRACT FROM AUTHOR]

Highlights • Glucocorticosteroid (GCS) continuous to decrease in Germany. • Natalizumab utilization decreased with the emergence of additional treatment options. • GCS utilization decreases for both RRMS and SPMS. • The generally observed decrease in relapses per year is confirmed with in the data. [ABSTRACT FROM AUTHOR]