Development of a new immersive virtual reality (VR) headset-based dexterity training for patients with multiple sclerosis: Clinical and technical aspects.

BACKGROUND Impaired manual dexterity is frequent and disabling in patients with multiple sclerosis (MS), affecting activities of daily living and quality of life. OBJECTIVE To develop a new immersive virtual-reality (VR) headset-based dexterity training to improve impaired manual dexterity in persons with MS (pwMS) while being feasible and usable in a home-based setting. METHODS The training intervention was tailored to the specific group of pwMS by implementing a simple and intuitive application with regard to hardware and software. To be efficacious, the training intervention covers the main functions of the hands and arm relevant for use in everyday life. RESULTS Taking clinical, feasibility, usability as well as technical aspects with regard to hardware and software into account, six different training exercises using hand tracking technology were developed on the Meta quest 2 using Unity. CONCLUSION We report the developmental process of a new immersive virtual VR headset-based dexterity training for pwMS implementing clinical and technical aspects. Good feasibility, usability, and patient satisfaction was already shown in a feasibility study qualifying this training intervention for further efficacy trials

Feasibility and usability of a new home-based immersive virtual reality headset-based dexterity training in multiple sclerosis.

BACKGROUND Impaired manual dexterity is frequent and disabling in patients with multiple sclerosis (MS), affecting activities of daily living and quality of life. OBJECTIVE The aim of this study was to evaluate the feasibility, usability and patient engagement/satisfaction of a home-based immersive virtual reality (VR) headset-based dexterity training in persons with multiple sclerosis (pwMS). In addition, preliminary efficacy data on the impact of this new training on manual dexterity were collected. METHODS Single arm prospective study. After a waiting period of two weeks, pwMS performed a specifically developed home-based VR headset-based dexterity training using the Oculus quest 2 for two weeks with five training sessions/week, each session for approximately 20 minutes. Primary endpoints were feasibility (measured by the adherence rate), usability (System Usability Scale, SUS) and patient engagement/satisfaction (Custom User Engagement Questionnaire, CUEQ). Secondary exploratory efficacy endpoints, measured before and after the waiting period as well as after the training intervention, were the Nine-hole-Peg-Test (9HPT), Coin rotation task (CRT), Handheld JAMAR dynamometer, Arm Function in Multiple Sclerosis Questionnaire (AMSQ) and the Multiple Sclerosis Impact Scale 29 (MSIS 29). RESULTS Eleven pwMS (mean age 49 ± 10.87 SD, mean EDSS 4.28 ± 1.48 SD) participated in the study. Feasibility (adherence rate: 81.8%), usability (median SUS score 94 (IQR = 78-96)) and patient engagement/satisfaction (median 8 on scale of 1-10) of the VR training was very high. In addition, the CRT for the dominant hand improved significantly after training (p = 0.03). CONCLUSIONS The good results on feasibility, usability, and patient engagement/satisfaction qualify this home-based immersive VR headset-based dexterity training approach for the use in home-based neurorehabilitation in pwMS. Improved fine motor skills for the dominant hand suggest preliminary efficacy, but this needs to be proven in a future randomized-controlled trials

Patient-tailored multimodal neurorehabilitation: The Lucerne model

Neurorehabilitation is a rapidly developing subspecialty of neurology due to medical advances and growing knowledge on functional recovery from brain injury such as plasticity and regeneration in the nervous system. Furthermore, progress in modern technologies facilitate new therapeutic concepts. Patient-tailored, flexible multimodal neurorehabilitation is essential in neurological diseases due to the diversity of symptoms. In addition, rehabilitative treatment should be realized from disease onset. To fulfill these goals, the neurocenter of the Cantonal Hospital Lucerne established an uninterrupted treatment chain from the emergency stage to the social and occupational reintegration, which is described in this article with a focus on stroke, Parkinson’s disease, and multiple sclerosis patients

From Diagnosis to Satisfaction in Multiple Sclerosis: A Swiss Patient Survey Highlighting the Importance of the First Diagnostic Consultation

Background: An early treatment start with disease modifying therapies (DMT) and long-term adherence is crucial in the treatment of people with multiple sclerosis (PwMS) to prevent future disability. Objectives: To gain information on the diagnostic process, decision making, treatment start and adherence with regard to DMT as well as satisfaction in PwMS in Switzerland to optimize management of PwMS. Methods: A survey was conducted between June 2017 and March 2018 in six hospital-based MS centres and eight private practices in Switzerland. PwMS according to the 2010 McDonald criteria, aged 18–60 years, having a clinical isolated syndrome, relapsing remitting MS, or secondary progressive MS were eligible. The survey contained 40 questions, covering participants’ background and circumstances, treatment decisions, therapy start, treatment adherence, and satisfaction (EKNZ Req-2016-00701). Results: 212 questionnaires were returned for analysis. Of these, 125 (59.0%) were answered by patients treated by practice-based neurologists and 85 (40.1%) by patients treated in hospitals. That PwMS were satisfied overall with current medical care, that they were free of relapses and disease progression, and that they were able to live independently were the main goals of patients. Satisfaction was reflected by an early therapy start and a high adherence to DMT in our cohort. The treating neurologist played a major role in this regard. Furthermore, a satisfactory first diagnostic consultation (FDC) was crucial for successful long-term patient care positively influencing an early treatment start, longer duration of the initial therapy, as well as adherence to treatments and general satisfaction. Conclusion: The treating neurologist and especially a satisfactory FDC play a major role for the successful long-term treatment of PwMS. Detailed information on various aspects of the disease and time with the treating neurologist seems to be of major importance

Tolerance of intravenous methylprednisolone for relapse treatment in demyelinating CNS disease

In Switzerland, the first course of intravenous steroids for treatment of episodes of demyelinating CNS disease is usually administered in an inpatient setting. We prospectively evaluated short term tolerance of treatment with special emphasis on sleep quality

Factors associated with material deprivation in persons with multiple sclerosis in Switzerland: Cross-sectional data from the Swiss Multiple Sclerosis Registry.

BACKGROUND Multiple sclerosis (MS) impacts education, future career pathways and working capability and therefore may negatively impact the financial situation of persons with MS (pwMS) in Switzerland. We therefore investigated the financial situation and its influencing sociodemographic and disease-specific factors of pwMS compared to the general Swiss population with focus on material deprivation (MD). METHODS Data on the financial situation of pwMS were collected via a specific questionnaire added to the regular, semi-annual follow-up assessments of the Swiss Multiple Sclerosis Registry. Questions were taken in an unmodified format from the standardized "Statistics on Income and Living Conditions" (SILC) questionnaire 2019 of the Federal Statistical Office of Switzerland which evaluates the financial situation of the general Swiss population, enabling a direct comparison of pwMS with the general Swiss population. RESULTS PwMS were 1.5 times more frequently affected by MD than the general Swiss population (6.3% of pwMS versus 4.2% of the general Swiss population) which was confirmed in a multivariable logistic regression analysis of pooled SILC and Swiss Multiple Sclerosis Registry (SMSR) data. High symptom burden, having only mandatory schooling, well as having a pending disability insurance application (as opposed to no application or receiving benefits) were associated with a higher odds of MD whereas higher education, older age, having a Swiss citizenship, living with a spouse or a partner or being currently employed were independently associated with a lower odds of MD. CONCLUSION MS has a negative impact on the financial situation and is associated with MD. PwMS with a high symptom burden at the transition from work force to receiving disability benefits appeared to be vulnerable for MD. Higher education, older age, having a Swiss citizenship, living with a spouse or a partner or being currently employed were independently associated with a lower odds of MD

Experiences of persons with multiple sclerosis with the Covid-19 vaccination: A cross-sectional study of the Swiss Multiple Sclerosis Registry.

BACKGROUND Despite strong recommendations for coronavirus disease 2019 (Covid-19) vaccination by multiple sclerosis (MS) organizations, some persons with MS (pwMS) remain vaccine hesitant. The Swiss MS Registry conducted a survey to explore Covid-19 vaccine hesitancy, self-reported side effects and changes in MS symptoms following vaccination in adult pwMS. METHODS Self-reported data were analyzed cross-sectionally. Multivariable logistic regression was used to explore participant characteristics associated with Covid-19 vaccine hesitancy. RESULTS Of 849 respondents, 73 (8.6%) were unvaccinated. Hesitation to vaccinate was most often a personal preference (N = 42, 57.53%). Factors negatively associated with vaccine hesitancy included older age (OR = 0.97 per year, 95% CI [0.94, 0.99]) and regularly seeing healthcare professionals (OR = 0.25, 95% CI [0.07, 0.85]). A history of confirmed Covid-19 infection (OR = 3.38, 95% CI [1.69, 6.77]) and being underweight (OR = 4.50, 95% CI [1.52, 13.36]) were positively associated with vaccine hesitancy. Of 768 participants who provided information, 320 (41.2%) and 351 (45.2%) reported vaccination side effects after the first and second vaccinations, respectively. Changes in MS symptoms were reported by 49 (6.3%) participants after the first and 67 (9.0%) participants after the second vaccination, and were most often described as increased or new-onset fatigue (N = 17/49 (34.7%) after the first and N = 21/67 (31.3%) after the second dose). CONCLUSIONS Covid-19 vaccine hesitancy was low among surveyed pwMS. The risk of vaccine hesitancy was higher among younger pwMS, those with a history of Covid-19 infection, and those without regular contact with healthcare professionals

Comparison of mRNA Vaccinations with BNT162b2 or mRNA-1273 in Anti-CD20-Treated Multiple Sclerosis Patients

Objective: Anti-CD20-treated patients are at risk of a reduced humoral immune response during the SARS-CoV-2 pandemic. Our aim was to compare the antibody response after two vaccinations with the mRNA vaccines BNT162b2 or mRNA-1273 in patients with multiple sclerosis. Methods: Data from the University Hospital of Bern and Cantonal Hospital of Lucerne were retrospectively collected from medical records and then analyzed. Anti-spike IgG serum titers were collected from both centers and were considered to be protective from a value of ≥100 AU/mL. Continuous variables were given as the mean and 95% confidence interval (95% CI); categorical variables were given as frequencies. A Mann–Whitney test and Fisher’s exact test as well as a multivariable linear regression analysis with anti-spike IgG (AU/mL) as the dependent variable were run using SPSS Statistic 25 (IBM Corp., Amonk, NY, USA). Results: A total of 74 patients were included; 41/74 (63.51%) were female patients and the mean age was 46.6 years (95% CI 43.4–49.9). Of these patients, 36/74 were vaccinated with BNT162b2 and 38/74 with mRNA-1273, following the national vaccination recommendation. In both vaccine groups, protective anti-spike IgG titers (≥100 AU/mL) were infrequently achieved (5/74: mRNA-1273 3/38; BNT162b2 2/36). Conclusions: In addition to a low rate of protective anti-spike IgG titers in both vaccine groups, we identified a drop in anti-spike IgG serum titers over time. This observation bears therapeutic consequences, as initial positive titers should be checked in case of an infection with the SARS-CoV-2 virus to identify patients who would benefit from an intravenous anti-spike IgG treatment against acute COVID-19

Correlation of disability with quality of life in patients with multiple sclerosis treated with natalizumab: primary results and post hoc analysis of the TYSabri ImPROvement study (PROTYS).

BACKGROUND In patients with multiple sclerosis (MS), relapses and disability progression have been associated with decreased health-related quality of life (HRQoL). METHODS PROTYS, a prospective, multicentre, single-arm, observational study in seven Swiss MS centres, evaluated correlations between change in disability status (measured through the Expanded Disability Status Scale (EDSS)) and HRQoL changes (measured through the global Multiple Sclerosis International Quality of Life (MusiQoL) index questionnaire) in 35 patients with relapsing remitting MS on natalizumab for 1 year. In addition, several other scales were also used, such as: Multiple Sclerosis Intimacy and Sexuality Questionnaire-19, EuroQoL-5 Dimension, and Fatigue Scale of Motor and Cognitive Function. A post hoc analysis further assessed the association between HRQoL changes after 1 year and the MusiQoL subscores and other patient-reported outcome (PRO) measures. RESULTS At 1 year, patients were categorised into 'EDSS improved' (6/35), 'EDSS stable' (28/35) and 'EDSS worsened' (1/35). Mean disability scores decreased for 'EDSS improved' and 'EDSS stable' but increased for 'EDSS worsened'. Mean MusiQoL index score for 'EDSS improved' increased from 61.2 at baseline to 66.3 at 1 year, while the 'EDSS stable' group increased from 67.9 to 70.8. No meaningful statistical relationship was observed between EDSS group and changes in MusiQoL score. For the post hoc analysis, patients were categorised in 'MusiQoL improved' (n=21) and 'MusiQoL worsened' (n=14) groups. MusiQoL subscores for 'symptoms,' 'psychological well-being' and 'activities of daily living', as well as scores for several related PRO measures, correlated with improvement of the MusiQoL global index. There was no correlation between the changes in MusiQoL global index and EDSS score. CONCLUSIONS Natalizumab treatment for 1 year resulted in either improved or stable EDSS status in most patients, and although no significant relationship was observed between global HRQoL change and EDSS change, several domains of HRQoL seemed to improve with natalizumab treatment. TRIAL REGISTRATION NUMBER NCT02386566

Blending citizen science with natural language processing and machine learning: Understanding the experience of living with multiple sclerosis.

The emergence of new digital technologies has enabled a new way of doing research, including active collaboration with the public ('citizen science'). Innovation in machine learning (ML) and natural language processing (NLP) has made automatic analysis of large-scale text data accessible to study individual perspectives in a convenient and efficient fashion. Here we blend citizen science with innovation in NLP and ML to examine (1) which categories of life events persons with multiple sclerosis (MS) perceived as central for their MS; and (2) associated emotions. We subsequently relate our results to standardized individual-level measures. Participants (n = 1039) took part in the 'My Life with MS' study of the Swiss MS Registry which involved telling their story through self-selected life events using text descriptions and a semi-structured questionnaire. We performed topic modeling ('latent Dirichlet allocation') to identify high-level topics underlying the text descriptions. Using a pre-trained language model, we performed a fine-grained emotion analysis of the text descriptions. A topic modeling analysis of totally 4293 descriptions revealed eight underlying topics. Five topics are common in clinical research: 'diagnosis', 'medication/treatment', 'relapse/child', 'rehabilitation/wheelchair', and 'injection/symptoms'. However, three topics, 'work', 'birth/health', and 'partnership/MS' represent domains that are of great relevance for participants but are generally understudied in MS research. While emotions were predominantly negative (sadness, anxiety), emotions linked to the topics 'birth/health' and 'partnership/MS' was also positive (joy). Designed in close collaboration with persons with MS, the 'My Life with MS' project explores the experience of living with the chronic disease of MS using NLP and ML. Our study thus contributes to the body of research demonstrating the potential of integrating citizen science with ML-driven NLP methods to explore the experience of living with a chronic condition