How do patients enter the healthcare system after the first onset of multiple sclerosis symptoms? The influence of setting and physician specialty on speed of diagnosis.

BACKGROUND: Diagnosing multiple sclerosis (MS) early is crucial to avoid future disability. However, potentially preventable delays in the diagnostic cascade from contact with a physician to definite diagnosis still occur and their causes are still unclear. OBJECTIVE: To identify the possible causes of delays in the diagnostic process. METHODS: We analyzed the data of the Swiss MS Registry. With logistic regression, we modeled the time from the first contact to the first consultation (contact-to-evaluation time, ⩽1 month/>1 month) and the evaluation-to-diagnosis time (⩽6 months/>6 months). Potential factors were health system characteristics, sociodemographic variables, first symptoms, and MS type. RESULTS: We included 522 participants. Mostly, general practitioners (67%) were contacted first, without delaying the diagnosis. In contrast, first symptoms and MS type were the major contributors to delays: gait problems were associated with longer contact-to-evaluation times, depression as a concomitant symptom with longer evaluation-to-diagnosis times, and having primary progressive MS prolonged both phases. In addition, living in mountainous areas was associated with longer contact-to-evaluation times, whereas diagnosis after 2000 was associated with faster diagnoses. CONCLUSION: For a quicker diagnosis, awareness of MS as a differential diagnosis of gait disorders and the co-occurrence of depression at onset should be raised, and these symptoms should be attentively followed.

Tolerability and safety of urotainer® polihexanide 0.02% in catheterized patients: a prospective cohort study.

BACKGROUND: In patients with indwelling bladder catheters for > 2 weeks, bacterial colonization is inevitable, leading to urinary tract infections or encrustations with subsequent catheter blockage. Currently, bladder irrigations are the most frequently used prophylactic means, but the best solution remains yet to be determined. In vitro studies demonstrate that polihexanide is a promising option for catheter irrigation, but no data about safety and tolerability exist. METHODS: In a prospective observational study in patients with indwelling bladder catheter for > 2 weeks, a 0.02% polihexanide solution was used to rinse the catheter on five consecutive days. Adverse events, tolerability and vital signs were assessed before, during, after and at the end of the treatment period. RESULTS: There was no serious adverse event in the study. A total of 28 adverse events (AEs) in 15 (46.88%) participants were experienced. Absolute changes in pain scores were not clinically relevant. No incidences of either flushing or sweating were found during instillation. Bladder spasms during instillation were reported in two cases during a single instillation. Mean pulse rates did not change by more than 3 beats per minute. Mean changes in body temperature did not exceed 0.12 °C. Clinically relevant changes in blood pressure were recorded for 3 patients. CONCLUSIONS: This is the first study to demonstrate that a 0.02% polihexanide solution can safely be used for catheter irrigation. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT02157415 ), June 6th, 2014.

Urinary incontinence in stroke survivors - Development of a programme theory.

AIMS AND OBJECTIVES: To develop, in an inpatient rehabilitation setting, a programme theory that promotes continence in people who have suffered a stroke. BACKGROUND: Urinary incontinence in stroke survivors impacts the quality of life, rehabilitation outcomes and ultimately incurred costs of the patient. Different approaches are available for developing and testing complex interventions. DESIGN: Building a research-based programme theory. METHODS: To elaborate the intervention, a guidance for developing a complex intervention for nursing was chosen and the sources that should be considered were defined. Subsequently, a research-based programme theory was generated that was represented via a theoretical approach logic model. This study was guided by the checklist for reporting theory of change in public health interventions. RESULTS: The intervention consists of six parts with three outcome chains on interconnected levels, which are oriented towards patients and nurses. The important aspects of the programme theory are communication, individually tailored measures and the definition of interdisciplinary objectives. CONCLUSION: Developing a programme theory and representing it via a logic model help clarify the initial intervention and ensure that implementation strategies are well thought out. RELEVANCE TO CLINICAL PRACTICE: By employing detailed reflection and using previous research, it is expected that the intervention can be implemented successfully and its effectiveness can be investigated in more depth.

High-intensity interval exercise improves cognitive performance and reduces matrix metalloproteinases-2 serum levels in persons with multiple sclerosis: A randomized controlled trial.

BACKGROUND: Aerobic exercise can improve cognitive performance in healthy elderly people. OBJECTIVE: The aim of this study was to investigate the influence of a 3-week high-intensity aerobic exercise programme (high-intensity training group (HIT)) on cognitive performance in persons with multiple sclerosis (MS) compared with a standard exercise programme (control training (CT)). METHODS: A total of 60 persons with MS (Expanded Disability Status Scale (EDSS): 1.0-6.5) were randomized to a HIT group (3×/week for 20 minutes, including five 3-minute exercise intervals at 80% of peak oxygen uptake (VO2-peak)) or a CT group (continuously 5×/week for 30 minutes/session at 65% of VO2-peak). Cognitive performance was assessed using the Brief International Cognitive Assessment for MS at entry ( t0) and discharge ( t1). Furthermore, VO2-peak, brain-derived neurotrophic factor, serotonin and matrix metalloproteinases (MMP)-2 and -9 were measured. RESULTS: Compared to CT, HIT significantly improved verbal memory. Significant improvements over time in executive functions were found in both groups. Secondary outcomes indicated significant improvements in VO2-peak and a significant reduction in MMP-2 in the HIT group only. CONCLUSION: HIT represents a promising strategy to improve verbal memory and physical fitness in persons with MS. Further research is needed to determine the impact of exercise on biomarkers in MS.

The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.

BACKGROUND: Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide. METHODS: In light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study. The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS. The innovative study design ("layer model") offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants. DISCUSSION: The SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS. TRIAL REGISTRATION: ClinicalTrials.gov NCT02980640 ; December 6, 2016; retrospectively registered.

(Can) Not talk about it - Urinary incontinence from the point of view of stroke survivors: a qualitative study.

PURPOSE: The current study intends to gain an in-depth understanding of stroke survivors' lived experience of urinary incontinence and its treatment in an inpatient rehabilitation clinic. METHODS: A qualitative approach was chosen. Semi-structured individual interviews with ten stroke survivors suffering from urinary incontinence were conducted in an inpatient rehabilitation clinic and analysed using qualitative content analysis with an inductive approach. RESULTS: '(Can) not talk about it' was identified as the first main category. The affected persons do not talk about urinary incontinence because they are ashamed. At the same time, no one asks them about this issue. Psychological strain is so high that patients feel the need to talk about incontinence, but from their point of view, conversations with nurses - if they indeed occur - are superficial or nurses do not listen. Therefore, patients' needs and concerns are not properly considered. 'Trying to command incontinence' was also identified as a main category. Participants reported that they try to command incontinence and to develop their own strategies in order to hide urinary incontinence and prevent shameful situations. However, this proved mostly unsuccessful and resulted in resignation to their condition. CONCLUSION: It is important to raise awareness within the treatment team of urinary incontinence in stroke survivors. Team members should be able to communicate about urinary incontinence in an open and empathic way. Obviously, there is great potential for supporting stroke survivors in dealing with incontinence.

Effectiveness of non-pharmacological interventions to promote urinary continence in stroke survivors ­ a systematic literature review / Wirksamkeit von nichtmedikamentösen Interventionen zur Förderung der Urinkontinenz bei Menschen nach einem cerebro-vaskulären Insult - eine systematische Literaturübersicht

Background: Around half of the people who survive a cerebrovascular insult are suffering from urinary incontinence. This is a predictor for functional outcomes and affects the quality of life negatively. Until now, it is not clear, which the optimal method of treatment is. A systematic review of 2008 showed an insufficient data situation and couldn't make a recommendation. Research question: Which non-pharmacological interventions are effective to promote urinary continence in adult persons who have suffered a cerebrovascular insult? Method: To answer the question a systematic literature review was performed. The literature search was conducted in the databases PubMed, CINAHL, CENTRAL and PsycInfo. The period from March 2007 to May 2015 was taken into account. Results: There were a total of six studies included which examined 732 persons. The following interventions were explored for their effectiveness: transcutaneous electrical nerve stimulation, urodynamic assessment with recommendation of bladder emptying method and interventions that consist of several components (e. g. toilet training). All studies showed a positive effect in at least one outcome. Conclusions: There is limited evidence for interventions to promote urinary continence in people suffering a cerebrovascular insult. An intervention consisting of assessment and individual adapted measures currently appear to be the best treatment method.

Telerehabilitation for persons with multiple sclerosis.

BACKGROUND: Telerehabilitation, an emerging method, extends rehabilitative care beyond the hospital, and facilitates multifaceted, often psychotherapeutic approaches to modern management of patients using telecommunication technology at home or in the community. Although a wide range of telerehabilitation interventions are trialed in persons with multiple sclerosis (pwMS), evidence for their effectiveness is unclear. OBJECTIVES: To investigate the effectiveness and safety of telerehabilitation intervention in pwMS for improved patient outcomes. Specifically, this review addresses the following questions: does telerehabilitation achieve better outcomes compared with traditional face-to-face intervention; and what types of telerehabilitation interventions are effective, in which setting and influence which specific outcomes (impairment, activity limitation and participation)? SEARCH METHODS: We performed a literature search using the Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Review Group Specialised Register( 9 July, 2014.) We handsearched the relevant journals and screened the reference lists of identified studies, and contacted authors for additional data. SELECTION CRITERIA: Randomised controlled trials (RCTs) and controlled clinical trials (CCTs) that reported telerehabilitation intervention/s in pwMS and compared them with some form of control intervention (such as lower level or different types of intervention, minimal intervention, waiting-list controls or no treatment (or usual care); interventions given in different settings) in adults with MS. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies and extracted data. Three review authors assessed the methodological quality of studies using the GRADEpro software (GRADEpro 2008) for best-evidence synthesis. A meta-analysis was not possible due to marked methodological, clinical and statistical heterogeneity between included trials and between measurement tools used. Hence, we performed a best-evidence synthesis using a qualitative analysis. MAIN RESULTS: Nine RCTs, one with two reports, (N = 531 participants, 469 included in analyses) investigated a variety of telerehabilitation interventions in adults with MS. The mean age of participants varied from 41 to 52 years (mean 46.5 years) and mean years since diagnosis from 7.7 to 19.0 years (mean 12.3 years). The majority of the participants were women (proportion ranging from 56% to 87%, mean 74%) and with a relapsing-remitting course of MS. These interventions were complex, with more than one rehabilitation component and included physical activity, educational, behavioural and symptom management programmes.All studies scored 'low' on the methodological quality assessment. Overall, the review found 'low-level' evidence for telerehabilitation interventions in reducing short-term disability and symptoms such as fatigue. There was also 'low-level' evidence supporting telerehabilitation in the longer term for improved functional activities, impairments (such as fatigue, pain, insomnia); and participation measured by quality of life and psychological outcomes. There were limited data on process evaluation (participants'/therapists' satisfaction) and no data available for cost effectiveness. There were no adverse events reported as a result of telerehabilitation interventions. AUTHORS' CONCLUSIONS: There is currently limited evidence on the efficacy of telerehabilitation in improving functional activities, fatigue and quality of life in adults with MS. A range of telerehabilitation interventions might be an alternative method of delivering services in MS populations. There is insufficient evidence to support on what types of telerehabilitation interventions are effective, and in which setting. More robust trials are needed to build evidence for the clinical and cost effectiveness of these interventions.

Content validity of the Comprehensive ICF Core Set for multiple sclerosis from the perspective of speech and language therapists.

BACKGROUND: The Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for Multiple Sclerosis (MS) is a comprehensive framework to structure the information obtained in multidisciplinary clinical settings according to the biopsychosocial perspective of the International Classification of Functioning, Disability and Health (ICF) and to guide the treatment and rehabilitation process accordingly. It is now undergoing validation from the user perspective for which it has been developed in the first place. AIMS: To validate the content of the Comprehensive ICF Core Set for MS from the perspective of speech and language therapists (SLTs) involved in the treatment of persons with MS (PwMS). METHODS & PROCEDURES: Within a three-round e-mail-based Delphi Study 34 SLTs were asked about PwMS' problems, resources and aspects of the environment treated by SLTs. Responses were linked to ICF categories. Identified ICF categories were compared with those included in the Comprehensive ICF Core Set for MS to examine its content validity. OUTCOMES & RESULTS: Thirty-four SLTs named 524 problems and resources, as well as aspects of environment. Statements were linked to 129 ICF categories (60 Body-functions categories, two Body-structures categories, 42 Activities-&-participation categories, and 25 Environmental-factors categories). SLTs confirmed 46 categories in the Comprehensive ICF Core Set. Twenty-one ICF categories were identified as not-yet-included categories. CONCLUSIONS & IMPLICATIONS: This study contributes to the content validity of the Comprehensive ICF Core Set for MS from the perspective of SLTs. Study participants agreed on a few not-yet-included categories that should be further discussed for inclusion in a revised version of the Comprehensive ICF Core Set to strengthen SLTs' perspective in PwMS' neurorehabilitation.

Natural language processing analysis of the theories of people with multiple sclerosis about causes of their disease.

BACKGROUND: While potential risk factors for multiple sclerosis (MS) have been extensively researched, it remains unclear how persons with MS theorize about their MS. Such theories may affect mental health and treatment adherence. Using natural language processing techniques, we investigated large-scale text data about theories that persons with MS have about the causes of their disease. We examined the topics into which their theories could be grouped and the prevalence of each theory topic. METHODS: A total of 486 participants of the Swiss MS Registry longitudinal citizen science project provided text data on their theories about the etiology of MS. We used the transformer-based BERTopic Python library for topic modeling to identify underlying topics. We then conducted an in-depth characterization of the topics and assessed their prevalence. RESULTS: The topic modeling analysis identifies 19 distinct topics that participants theorize as causal for their MS. The topics most frequently cited are Mental Distress (31.5%), Stress (Exhaustion, Work) (29.8%), Heredity/Familial Aggregation (27.4%), and Diet, Obesity (16.0%). The 19 theory topics can be grouped into four high-level categories: physical health (mentioned by 56.2% of all participants), mental health (mentioned by 53.7%), risk factors established in the scientific literature (genetics, Epstein-Barr virus, smoking, vitamin D deficiency/low sunlight exposure; mentioned by 47.7%), and fate/coincidence (mentioned by 3.1%). Our study highlights the importance of mental health issues for theories participants have about the causes of their MS. CONCLUSIONS: Our findings emphasize the importance of communication between healthcare professionals and persons with MS about the pathogenesis of MS, the scientific evidence base and mental health.

Multiple sclerosis (MS) is a disease that affects the brain and spinal cord, causing a wide range of symptoms. Our study investigated what people living with the disease think causes MS. We analyzed the replies given by 486 people who were questioned about their MS to look for patterns in the responses. We identified 19 distinct themes, notably mental and work-related stress, genetics, and dietary factors, which we grouped into 4 categories: physical health, mental health, established scientific risk factors, and chance. We found that mental health problems were viewed as a key factor for MS. Our work highlights the need for healthcare professionals to have transparent conversations with people with MS about what is known about the disease course and potential causes. In addition, it highlights the importance of fully informing and supporting people with MS regarding their mental health.

Helmholtz and Goethe -- controversies at the birth of modern neuroscience.

Hermann von Helmholtz (1821-1894), a great German scientist and philosopher, made his mark during the exciting twilight period from the Enlightenment and Romanticism to the beginnings of modern neuroscience and offered new perspectives through his work. His early inclination was for physics, which he found more attractive than purely geometric and algebraic studies, but his father was not able to make it possible for him to study physics, and so he studied medicine in order to earn a living. His lecture before the Physical Society in Berlin on July 23, 1847, 'about the conservation of the force' marked an epochal turn, even though his intention had been to deliver 'merely, some critical investigations and arrangement of facts in favor of the physiologists' as well as good arguments for the refusal of the theory of 'vitality'. Even though these new concepts were at first dismissed as fantastic speculation by some of the authorities in physics and philosophy of the day, they were enthusiastically welcomed by younger students of philosophy and the older men soon had to allow themselves to be persuaded that the effectiveness of vitality, though great and beautiful, is actually always dependent on some source of energy. Helmholtz critically assessed Goethe as a physical scientist but he did not dispute his great importance as a poet.

Summary of Research: Caregiver Involvement in MS: Duty or Disruption?

This Summary of Research summarizes a previously published discussion between people with multiple sclerosis (PwMS) and their caregivers and healthcare professionals (HCPs) about how to include caregivers in consultations and decisions about multiple sclerosis (MS) care. The aim of the discussion was to help HCPs to understand differences in these relationships so they can adapt the style of consultations to support everyone.

Fingolimod versus interferon beta 1-a: Benefit-harm assessment approach based on TRANSFORMS individual patient data.

Background: Fingolimod is a disease-modifying drug approved for multiple sclerosis but its benefit-harm balance has never been assessed compared to other active treatments. Objectives: Our aim was to compare the benefits and harms of fingolimod with interferon beta-1a using individual patient data from TRial Assessing injectable interferon versus FTY720 Oral in RRMS trial. Methods: We modelled the health status of patients over time including Expanded Disability Status Scale measurements, relapses and any adverse events. We assessed the mean health status between arms and the proportion of patients whose health deteriorated or improved relatively to baseline, using a prespecified minimal important difference of 4.6. We performed sensitivity analyses to test our assumptions. Results: Main and sensitivity analyses favoured fingolimod 0.5 mg over interferon beta-1a. The average health status difference was 1.01 (95% CI 0.93-1.08). Patients on fingolimod 0.5 mg were 0.47 (95% CI: 0.35-0.63, p < 0.001) times less likely to experience a relevant decline in health status compared to interferon beta-1a patients, with a number needed to treat of 7.10 [5.18, 11.23]. Conclusions: Fingolimod's net benefit over interferon beta-1a did not reach the clinical relevance over 1 year, but the decreased risk for health status deterioration may be more pronounced more long term and patients may prefer less treatment burden associated with fingolimod.

Promoting urinary continence in people suffering a stroke: Effectiveness of a complex intervention-An intervention study.

AIM: The study aimed to implement and measure effectiveness of a systematic continence management intervention in people suffering a stroke in undertaking rehabilitation. DESIGN: An intervention study was conducted. METHODS: In the first part of the study, patients were included in the control group and observed. After the training of the nursing staff, participants were assigned to the intervention group. The intervention consisted of screening, assessment, treatment, communication and evaluation. RESULTS: Forty-six patients took part in the study, of which 35 were in the control and 11 in the intervention groups. Within the two groups, significant improvements in outcomes were mostly seen during the study. For the Incontinence Quality of Life Social Embarrassment scale, a significantly higher increase was observed for the intervention group. The improvement between admission and discharge in the intervention group was notably larger for the outcome's incontinence and quality of life.

Caregiver Involvement in MS: Duty or Disruption?

Multiple sclerosis (MS) is a complex condition with numerous physical, cognitive and emotional symptoms. These may necessitate significant, permanent lifestyle changes for people with multiple sclerosis (PwMS) and their caregivers and families, meaning it is important in contemporary neurological practice to consider including families and/or caregivers in the management of MS. However, existing evidence suggests that family involvement is not always beneficial; for example, it can exert either a strong positive or negative influence on the ability of PwMS to achieve optimal outcomes from their treatment and disease management. This paper, based on a live debate between neurologists and PwMS, examines the current perceptions on constructive involvement of families and caregivers in consultations for and management of MS, and reveals several areas where additional studies are warranted. Shared decision-making in MS has historically been a collaboration solely between healthcare professionals (HCPs) and PwMS, but PwMS are now more frequently being accompanied to appointments by a support person. This paper encourages HCPs to understand the dynamics between PwMS and their support person, and to individualize consultations and information accordingly. Family and caregiver involvement in the provision of care for PwMS needs to be for the benefit of, and at the discretion of, the PwMS. Support for families of PwMS, although important, may be more effectively and appropriately delivered through other channels outside of the clinical setting. Educating HCPs on the current patient experience to enable them to provide improved personalized care will ensure a mutualistic, patient-centred relationship with PwMS, which will help to optimize outcomes. Communication tools may also facilitate these interactions.

Multiple sclerosis (MS) is a highly variable condition. The uncertainty this brings can affect the mental well-being of the entire family of someone living with MS. Additionally, people with MS may need help administering and remembering to use medicines, and require changes to the way they live their life (e.g. employment decisions, home adjustments and care), which can also disrupt the family's lifestyle. The family undoubtedly needs to be involved in certain decisions, such as family planning, or when caring for very young or old people with MS. However, extensive family involvement may not always be a good thing for all people with MS. Therefore, it is the responsibility of healthcare professionals to understand the pivotal role of the caregiver and seek appropriate opportunities to engage with family and support persons on a case-by-case basis. To highlight the importance of family members in the management of MS, an international group of expert neurologists and people with MS discussed the best ways to involve families in consultations and decision-making, without disrupting care or undermining the independence of the people with MS. The group stresses that a family's involvement in the provision of care needs to be for the benefit of the people with MS and that many factors can influence whether family involvement is perceived positively or negatively by the people with MS. Support for the family is important; however, it may be more appropriately delivered outside the healthcare professional consultation, and instead provided by a patient or caregiver organization.

Feelings of loneliness, COVID-19-specific-health anxiety and depressive symptoms during the first COVID-19 wave in Swiss persons with multiple sclerosis.

The aim of our study was to investigate whether self-reported feeling of loneliness (FoL) and COVID-19-specific health anxiety were associated with the presence of depressive symptoms during the first coronavirus disease 2019 (COVID-19) wave. Questionnaires of 603 persons of the Swiss Multiple Sclerosis Registry (SMSR) were cross-sectionally analyzed using descriptive and multivariable regression methods. The survey response rate was 63.9%. Depressive symptoms were assessed by the Beck Depression Inventory-Fast Screen (BDI-FS). COVID-19-specific health anxiety and FoL were measured using two 5-item Likert scaled pertinent questions. High scoring FoL (2.52, 95% confidence interval (CI) (2.06-2.98)) and/or COVID-19 specific health anxiety (1.36, 95% CI (0.87-1.85)) were significantly associated with depressive symptoms. Further stratification analysis showed that the impact of FoL on depressive symptoms affected all age groups. However, it was more pronounced in younger PwMS, whereas an impact of COVID-19 specific health anxiety on depressive symptoms was particularly observed in middle-aged PwMS. FoL and COVID-19-specific health anxiety were age-dependently associated with depressive symptoms during the first COVID-19 wave in Switzerland. Our findings could guide physicians, health authorities, and self-help groups to better accompany PwMS in times of public health crises.

Real-world disease-modifying therapy usage in persons with relapsing-remitting multiple sclerosis: Cross-sectional data from the Swiss Multiple Sclerosis Registry.

INTRODUCTION: Several disease-modifying therapies (DMTs), covering a broad spectrum of mechanisms of action, have been approved by regulatory agencies for the treatment of relapsing-remitting multiple sclerosis (RRMS). However, only little is known about the current real-world treatment situation in Switzerland. Based on data from a diverse population of 668 persons with RRMS from the Swiss Multiple Sclerosis Registry (SMSR), the present study aims to fill this gap with a descriptive, cross-sectional approach. METHODS: Data originated from the SMSR baseline questionnaire and follow-up surveys. Data on current health status and life situation in the last 6 months were extracted from the survey distributed throughout 2020 and 2021, while data on disease-modifying therapy (DMT) histories were included from preceding surveys. Initially, data was stratified into three DMT groups according to the current DMT status (NO (No DMT), CONTINUED (DMT started more than 6 months ago), and NEW (DMT started less than 6 months ago)). In a subsequent analysis, the sample was stratified into groups corresponding to the five most frequently prescribed DMTs. Self-reported outcomes including therapy discontinuation or interruption, relapses and side-effects in the last 6 months were analyzed per group. Life and health situation parameters were also determined and analyzed. RESULTS: The study population consisted of 445 (66.6%) individuals belonging to the CONTINUED, 84 (12.6%) to the NEW, and 139 (20.8%) to the NO group. Within the NO group, 24 (17.3%) reported relapses. Furthermore, self-reported relapses (28 (33.3%)), side-effects (39 (46.4%)), and treatment discontinuations or interruptions (30 (35.7%)) occurred more frequently in the NEW compared to the CONTINUED group (37 (8.3%), 125 (28.1%), 8 (1.8%), respectively). The three groups also differed with respect to age, time since diagnosis, number of symptoms, DMT history, and health-related quality of life. The five most frequently prescribed DMTs included fingolimod (33.4%), dimethyl fumarate (25.0%), ocrelizumab (23.6%), natalizumab (10.6%) and teriflunomide (7.5%). The frequency of self-reported relapses ranged from 9.7% to 13.6%. Notable differences were found in the number of self-reported side-effects, ranging from 9.1% with natalizumab to 56.7% with dimethyl fumarate. DISCUSSION: This cross-sectional analysis suggested that the majority of individuals with RRMS in Switzerland continuously receive tolerable DMT. However, groups not receiving DMT or struggling with side-effects or continued disease worsening while on DMT still persist. It is conceivable that the number of self-reported symptoms indicates the need for more detailed clarification of the DMT characteristics and expectations of treatment outcomes. Injectable DMTs no longer play a major role in the treatment of RRMS in Switzerland and a trend toward an early use of potent drugs is emerging.

The Real-World Experiences of Persons With Multiple Sclerosis During the First COVID-19 Lockdown: Application of Natural Language Processing.

BACKGROUND: The increasing availability of "real-world" data in the form of written text holds promise for deepening our understanding of societal and health-related challenges. Textual data constitute a rich source of information, allowing the capture of lived experiences through a broad range of different sources of information (eg, content and emotional tone). Interviews are the "gold standard" for gaining qualitative insights into individual experiences and perspectives. However, conducting interviews on a large scale is not always feasible, and standardized quantitative assessment suitable for large-scale application may miss important information. Surveys that include open-text assessments can combine the advantages of both methods and are well suited for the application of natural language processing (NLP) methods. While innovations in NLP have made large-scale text analysis more accessible, the analysis of real-world textual data is still complex and requires several consecutive steps. OBJECTIVE: We developed and subsequently examined the utility and scientific value of an NLP pipeline for extracting real-world experiences from textual data to provide guidance for applied researchers. METHODS: We applied the NLP pipeline to large-scale textual data collected by the Swiss Multiple Sclerosis (MS) registry. Such textual data constitute an ideal use case for the study of real-world text data. Specifically, we examined 639 text reports on the experienced impact of the first COVID-19 lockdown from the perspectives of persons with MS. The pipeline has been implemented in Python and complemented by analyses of the "Linguistic Inquiry and Word Count" software. It consists of the following 5 interconnected analysis steps: (1) text preprocessing; (2) sentiment analysis; (3) descriptive text analysis; (4) unsupervised learning-topic modeling; and (5) results interpretation and validation. RESULTS: A topic modeling analysis identified the following 4 distinct groups based on the topics participants were mainly concerned with: "contacts/communication;" "social environment;" "work;" and "errands/daily routines." Notably, the sentiment analysis revealed that the "contacts/communication" group was characterized by a pronounced negative emotional tone underlying the text reports. This observed heterogeneity in emotional tonality underlying the reported experiences of the first COVID-19-related lockdown is likely to reflect differences in emotional burden, individual circumstances, and ways of coping with the pandemic, which is in line with previous research on this matter. CONCLUSIONS: This study illustrates the timely and efficient applicability of an NLP pipeline and thereby serves as a precedent for applied researchers. Our study thereby contributes to both the dissemination of NLP techniques in applied health sciences and the identification of previously unknown experiences and burdens of persons with MS during the pandemic, which may be relevant for future treatment.

VladimirMikhailovic Bekhterev (1857-1927): strange circumstances surrounding the death of the great Russian neurologist.

The famous Russian neurologist Vladimir Mikhailovic Bekhterev (1857-1927) was ordered to examine Josef Stalin in December 1927 during the First All-Russian Neurological Congress in Moscow. Returning to the Congress after his consultation he told some colleagues that he had 'examined a paranoiac with a dry, small hand'. The next day, Bekhterev died and only his brain was examined postmortem, the body being cremated the same day.