Neurologisches Rehabilitationszentrum Quellenhof Bad Wildbad

BACKGROUND: Nabiximols (Sativex®), a cannabinoid-based oromucosal spray, is an add-on therapy for patients with moderate to severe multiple sclerosis spasticity (MSS) resistant to other medications. The primary objective was to provide real-life observational data of clinical experience of nabiximols in contrast to formal clinical trials of effectiveness. METHODS: This was an observational, prospective, multicenter, non-interventional study with a follow-up period of 3-4 months, conducted in routine care setting in Germany. Patients with moderate to severe MSS were included at nabiximols' initiation. Structured documentation forms, questionnaires and validated instruments were used for data collection at inclusion, 1 and 3 months after inclusion. RESULTS: Overall, 335 patients were assessed of whom 276 fitted the criteria and were included in the effectiveness analysis. After 1 month, nabiximols provided relief of resistant MSS in 74.6% of patients according to specialist assessment; mean spasticity 0-10 numerical rating scale (NRS) score decreased from 6.1 ± 1.8 to 5.2 ± 2.0 points; in patients with NRS improvement ≥20% mean NRS score decreased by 40%. After 3 months, 55.3% of patients had continued to use nabiximols and the mean NRS score had decreased by 25% from baseline. 17% of patients reported adverse events. CONCLUSION: Real-life data confirm nabiximols as an effective and well-tolerated treatment option for resistant MSS in clinical practice.

Background: Multiple sclerosis (MS) is a neuroinflammatory and neurodegenerative disease. Over time, symptoms accumulate leading to increased disability of patients. Objective: The objective of this article is to analyze the prevalence of symptoms and symptomatic treatment patterns in a nationwide MS registry. Methods: Data sets from 35,755 patients were analyzed. Results: More than two-thirds of patients were women with a mean age of 46.1 (±12.8) years. Median Expanded Disability Status Score (EDSS) was 3.0. The most frequently reported symptoms were fatigue, spasticity, and voiding disorders. In patients with short disease duration, fatigue was reported most frequently. Symptomatic treatment was most common for spasticity and depression, whereas fatigue was treated only in a third of affected patients. Almost a fifth of patients with EDSS ⩽ 3.5 and neuropsychological symptoms had retired from work. Conclusion: Whereas treatment for spasticity and depression is common in our cohort, sexual dysfunction, dysphagia, cognitive dysfunction, and fatigue are treated to a far lesser extent. The need for psychological support, physical, and occupational therapy has to be recognized as neuropsychological symptoms have a great impact on retirement at an early stage. Overall symptomatic treatment rates for the most common symptoms have increased over the last years ( p < 0.001).

AIMS: To gain real-life data on demographic and clinical characteristics, treatment patterns, treatment satisfaction and quality-of-life of multiple sclerosis-related spasticity (MSS) in Germany. MATERIAL AND METHODS: MObility ImproVEment (MOVE 1), a cross-sectional burden-of-disease study, combines retrospective 12-month chart documentation with questionnaires for both, patients and physicians. Data were collected at office-based neurologists, MS outpatient clinics and rehabilitation centres in Germany. Structured documentation forms, questionnaires and validated instruments were used for data collection. Patients with mild to severe MSS were included. Participants documented the clinical characteristics, impact of MSS on daily living, quality-of-life, treatment patterns and satisfaction with available drug treatment stratified by severity of MSS. Severity was assessed by patients and physicians. RESULTS: Of 419 patients enrolled at 42 centres from 4/2011 to 9/2011, 414 were available for analysis (mean age: 48.5 years; female: 64%). Most disturbing symptoms associated with spasticity reported by physicians and patients were stiffness (74%) and mobility restrictions (66%). Mean EQ-5D score fell from 0.6 to 0.3 with increasing severity of spasticity, while percentage of subjects with spasticity-related impairment of activities every day rose from 10% in patients with mild to 85% in patients with severe spasticity. At time of enrolment, 55% of patients received pharmacotherapy and 78% physiotherapy. These percentages increased with increasing severity (drugs: 39-84%; physiotherapy: 65-86%). Overall, 41% of physicians and 36% of patients were partial dissatisfied or dissatisfied with the effectiveness of available anti-spastic pharmacotherapy. CONCLUSIONS: Spasticity and its symptoms impair personal well-being and quality-of-life. Treatment of spasticity with drugs and physiotherapy is common, but satisfaction with the currently available anti-spastic pharmacotherapy is low.

We analyzed characteristics, motivation, and effectiveness of complementary and alternative medicine in a large sample of people with multiple sclerosis. A 53-item survey was mailed to the members of the German Multiple Sclerosis Society, chapter of Baden-Wuerttemberg. Surveys of 1573 patients (48.5 +/- 11.7 years, 74% women, duration of illness 18.1 +/- 10.5 years) were analyzed. In comparison with conventional medicine, more patients displayed a positive attitude toward complementary and alternative medicine (44% vs 38%, P < 0.05), with 70% reporting lifetime use of at least one method. Among a wide variety of complementary and alternative medicine, diet modification (41%), Omega-3 fatty acids (37%), removal of amalgam fillings (28%), vitamins E (28%), B (36%), and C (28%), homeopathy (26%), and selenium (24%) were cited most frequently. Most respondents (69%) were satisfied with the effects of complementary and alternative medicine. Use of complementary and alternative medicine was associated with religiosity, functional independence, female sex, white-collar job, and higher education (P < 0.05). Compared with conventional therapies, complementary and alternative medicine rarely showed unwanted side effects (9% vs 59%, P < 0.00001). A total of 52% stated that the initial consultation with their physician lasted less than 15 min. To conclude, main reasons for the use of complementary and alternative medicine include the high rate of side effects and low levels of satisfaction with conventional treatments and brief patients/physicians contacts.

Prior to 18 April 1906 the San Francisco Fire Department and knowledgeable persons in the insurance industry regarded a conflagration in San Francisco as inevitable. The 1906 San Francisco earthquake and ensuing fire is the greatest single fire loss in U.S. history, with 492 city blocks destroyed and life loss now estimated at more than 3,000. This paper describes fire protection practices in the United States prior to 1906; the conditions in San Francisco on the eve of the disaster; ignitions, spread, and convergence of fires that generated the 1906 conflagration; and damage to the water supply system in 1906 that gave impetus to construction of the largest high‐pressure water distribution network ever built—San Francisco's Auxiliary Water Supply System (AWSS). In the 1980s hydraulic network and fire simulation modeling identified weaknesses in the fire protection of San Francisco—problems mitigated by an innovative Portable Water Supply System (PWSS), which transports water long distances and helped extinguish the Marina fire during the 1989 Loma Prieta earthquake. The AWSS and PWSS concepts have been extended to other communities and provide many lessons, paramount of which is that communities need to develop an integrated disaster preparedness and response capability and be constantly vigilant in maintaining that capability. This lesson is especially relevant to highly seismic regions with large wood building inventories such as the western United States and Japan, which are at great risk of conflagration following an earthquake.

INTRODUCTION: To estimate the value of interventions in multiple sclerosis (MS) - where lifetime costs and outcomes cannot be observed - outcome data have to be combined with costs. This requires that cost data be regularly updated. OBJECTIVES AND METHODS: This study is part of a cross-sectional retrospective study in 16 countries collecting data on resource consumption and work capacity, health-related quality of life (HRQoL) and prevalent symptoms for patients with MS. Descriptive analyses are presented by level of severity, from the societal perspective, in EUR 2015. RESULTS: A total of 5475 patients (mean age 52 years) participated in Germany. In all, 84% were below retirement age, and of these, 51% were employed. Employment was related to disease severity, and MS affected productivity at work for 80% of patients. Overall, 96% and 78% of patients experienced fatigue and cognitive difficulties as a problem, respectively. The mean utility and total annual costs were 0.786 and 28,200€ at Expanded Disability Status Scale (EDSS) 0-3, 0.586 and €44,000 at EDSS 4-6.5 and 0.273 and €62,700 at EDSS 7-9, respectively. The mean cost of a relapse was estimated at €2500. CONCLUSION: This study provides current health economic data on MS in Germany that are important for the development of health policies and for estimating the value of the current and future treatments.

INTRODUCTION: In 2001, a nationwide multiple sclerosis (MS) registry was initiated in Germany under the auspices of the German MS Society, (DMSG Bundesverband e.V.). The project aimed at collecting epidemiological data and information on health care provision for MS patients in Germany. METHODS: After a 2-year pilot phase, the original entry mask was modified, and new centers were recruited, resulting in the registration of a total of 5821 patients in 2005 and 2006. Following a 2 stage quality control process, standardized data sets for 5445 patients (93.5%) were able to be analyzed. RESULTS: Mean duration from onset of disease to diagnosis was 3.5 years. More than 70% of patients received immunomodulatory drugs, whereas symptomatic treatments were less commonly administered. The number of participating centers as of 31 December 2006 was 57 (29 neurological hospitals, 11 rehabilitation units, 13 specialized practitioners, and 4 regional MS centers). DISCUSSION: The MS registry provides valuable data on patterns of care for MS patients in Germany, and may help to improve service provision and overall quality of life for these patients.

BACKGROUND: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. METHODS: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries' leaders, followed by telephone interviews with them. RESULTS: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients' perspectives were only collected in six registries. CONCLUSIONS: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.

BACKGROUND: Nabiximols (Sativex®), in a cannabinoid-based oromucosal spray, is an add-on therapy option for patients with moderate to severe multiple sclerosis spasticity (MSS) resistant to other medications. The study objective was to provide long-term data on clinical outcomes, tolerability, quality of life and treatment satisfaction for MSS patients receiving nabiximols in routine care. METHODS: This was the 12-month prolongation of the MOVE 2 study, an observational, prospective, multi-centre 3-month non-interventional study conducted in a routine care setting across Germany. Structured documentation forms, questionnaires and validated instruments were used for data collection. RESULTS: In total, 52 patients were included in the effectiveness analysis after 12 months. The mean spasticity numerical rating scale (NRS, 0-10) score decreased significantly from 6.0 ± 1.8 points at MOVE 2 baseline to 4.8 ± 1.9 points after 1 month and remained on this level after 12 months (4.5 ± 2.0 points); in patients classified as 'initial responders' (≥20% NRS improvement after 1 month) similar results were found (baseline: 6.3 ± 1.4 points; after 1 month: 4.0 ± 1.0 points; after 12 months: 4.3 ± 1.9 points). The majority of patients (84%) did not report adverse events. CONCLUSION: Real-life data confirm the long-term effectiveness and tolerability of nabiximols for the treatment of resistant MSS in everyday clinical practice.

OPINION article Front. Neurol., 03 March 2015Sec. Multiple Sclerosis and Neuroimmunology Volume 6 - 2015 | https://doi.org/10.3389/fneur.2015.00036

BACKGROUND AND PURPOSE: Predictive factors of long-term disability in patients with relapsing-remitting multiple sclerosis (RR-MS) are well known, but the weight of these factors does not explain the entire change of disability. Few studies have examined the predictive value of quality of life (QoL). OBJECTIVES: To determine the value of the initial level of QoL to predict changes in the disability status of patients with MS and to determine if specific-MS questionnaires predict more accuracy in these changes than generic questionnaires. DESIGN: multicenter, multi-regional, and longitudinal study. Main inclusion criteria: patients with RR-MS subtype and an Expanded Disability Status Scale (EDSS) score lower than 7.0. Sociodemographic and clinical data were recorded at baseline. Every 6 months up to month 24, QoL (MusiQoL and SF-36) was recorded. At 24 months, individuals were defined into two 'disability change' groups: the worsened and not worsened patients. RESULTS: Five-hundred and twenty-six patients were enrolled: 386 (83.7%) not worsened and 75 (16.3%) worsened patients at 24 months. The activity of daily living and the relationship with healthcare workers dimensions of MusiQoL questionnaire were independent predictors of change in the EDSS score after 24 months. The physical-functioning dimension of the SF-36 questionnaire predicted independently disability change after 24 months. CONCLUSIONS: Patient-reported baseline QoL levels provide additional prognostic information on MS disability beyond traditional clinical or sociodemographic factors. These findings reinforce the importance of incorporating a patient's evaluation of their own QoL level during patient monitoring and the assessment of treatment effects.

In 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR provides observational real-world data on long-term disease progression, sociodemographic factors, treatment and the healthcare status of people with MS. This paper aims to illustrate the framework of the GMSR. Structure, design and data quality processes as well as collaborations of the GMSR are presented. The registry's dataset, status and results are discussed. As of 08 January 2021, 187 centres from different healthcare sectors participate in the GMSR. Following its infrastructure and dataset specification upgrades in 2014, more than 196,000 visits have been recorded relating to more than 33,000 persons with MS (PwMS). The GMSR enables monitoring of PwMS in Germany, supports scientific research projects, and collaborates with national and international MS data repositories and initiatives. With its recent pharmacovigilance extension, it aligns with EMA recommendations and helps to ensure early detection of therapy-related safety signals.

We report on a patient with multiple sclerosis (MS) who presented with fatigue as the only manifestation of an acute MS relapse. Fatigue was assessed by the 'Würzburg Fatigue Inventory in MS (WEIMuS)' scale and confirmed by neuropsychological testing of attention. After high-dose corticosteroid therapy, subjective symptoms were completely abolished. The improvement was corroborated by both, the WEIMuS score and neuropsychological testing. MS-related fatigue may be the only symptom of an acute MS relapse, and neuropsychological methods may be used to objectively assess and follow the time course of this common and disabling symptom.

BACKGROUND: 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. METHODS: 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). RESULTS: 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'. CONCLUSION: 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.

BACKGROUND: Multimodal rehabilitation improves fatigue and mobility in persons with multiple sclerosis (PwMS). Effects are transient and may be conserved by internet-based physical activity promotion programs. OBJECTIVE: Evaluate the effects of internet-based physical activity and exercise promotion on fatigue, quality of life, and gait in PwMS after inpatient rehabilitation. METHODS: PwMS (Expanded Disability Status Scale (EDSS) ≤ 6.0, fatigue: Würzburg Fatigue Inventory for Multiple Sclerosis (WEIMuS) ≥ 32) were randomized into an intervention group (IG) or a control group (CG). After rehabilitation, IG received 3 months of internet-based physical activity promotion, while CG received no intervention. PRIMARY OUTCOME: self-reported fatigue (WEIMuS). SECONDARY OUTCOMES: quality of life (Multiple Sclerosis Impact Scale 29, MSIS-29), gait (2min/10m walking test, Tinetti score). MEASUREMENTS: beginning (T0) and end (T1) of inpatient rehabilitation, 3 (T2) and 6 (T3) months afterwards. RESULTS: < 0.001). MSIS-29 improved in both groups at T1 but remained improved at T2 and T3 only in IG. Gait improvements were more pronounced in IG at T2. CONCLUSIONS: The study provides Class II evidence that the effects of rehabilitation on fatigue, quality of life, and gait can be maintained for 3-6 months with an internet-based physical activity and exercise promotion program.

Background: Consumer activity monitors and smartphones have gained relevance for the assessment and promotion of physical activity. The aim of this study was to determine the concurrent validity of various consumer activity monitor models and smartphone models for measuring steps. Methods: Participants completed three activity protocols: (1) overground walking with three different speeds (comfortable, slow, fast), (2) activities of daily living (ADLs) focusing on arm movements, and (3) intermittent walking. Participants wore 11 activity monitors (wrist: 8; hip: 2; ankle: 1) and four smartphones (hip: 3; calf: 1). Observed steps served as the criterion measure. The mean average percentage error (MAPE) was calculated for each device and protocol. Results: Eighteen healthy adults participated in the study (age: 28.8 ± 4.9 years). MAPEs ranged from 0.3–38.2% during overground walking, 48.2–861.2% during ADLs, and 11.2–47.3% during intermittent walking. Wrist-worn activity monitors tended to misclassify arm movements as steps. Smartphone data collected at the hip, analyzed with a separate algorithm, performed either equally or even superiorly to the research-grade ActiGraph. Conclusion: This study highlights the potential of smartphones for physical activity measurement. Measurement inaccuracies during intermittent walking and arm movements should be considered when interpreting study results and choosing activity monitors for evaluation purposes.

Sativex® (GW Pharmaceuticals PLC, Porton Down, UK; Laboratorios Almirall, SA, Barcelona, Spain), a cannabinoid oromucosal spray containing a 1:1 ratio of 9-δ-tetrahydrocannabinol and cannabidiol, has been licensed in Germany since July 2011 as add-on therapy for moderate-to-severe multiple sclerosis (MS) treatment-resistant spasticity symptoms. The 'MOVE 2' study evaluated clinical outcomes, treatment satisfaction, quality of life (QoL) and provision of care in MS patients with spasticity receiving Sativex in everyday clinical practice. Data from 300 patients were collected from 42 specialized MS centers across Germany and were available for this analysis. Assessments, including the MS spasticity 0-10 numerical rating scale, modified Ashworth scale, patients' and physicians' clinical impressions, and QoL scales were rated at baseline and at 1 and 3 months after starting treatment with Sativex. Sativex provided relief of MS-related spasticity in the majority of patients who were previously resistant to treatment. In addition, clear improvements were noted in MS spasticity-associated symptoms (e.g., sleep quality, bladder function and mobility), activities of daily living and QoL. Sativex was generally well tolerated. The majority of patients (84%) reported no adverse events, and there was only a limited risk of serious adverse reactions. Furthermore, based on data from Sativex clinical trials, a Markov model-based analysis has shown that Sativex is a cost-effective treatment option for patients with MS spasticity in Germany.

OBJECTIVES: Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers' data provision into EUReMS. MATERIALS AND METHODS: EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS' perspectives. EUReMS' main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners. RESULTS: EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed. CONCLUSIONS: EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.

Aims: Identification of employment-associated factors with regard to patients with multiple sclerosis (PwMS) in Germany: the impact of the working situation on PwMS, the subjective difficulties and problems PwMS may experience at their work place and the reasons for withdrawing from work. Methods: 279 PwMS (189 employed (EM), and 90 early retired (ER)) completed a comprehensive questionnaire with standardized instruments: Multiple sclerosis work difficulties questionnaire (MSWDQ) on workplace related problems, Würzburger screening (WüScr) on perceived burden of disease with regard to work. Further general data about employment status, multiple sclerosis disease information including main symptoms and patients adaptations for an optimal working place were collected. Employed PwMS were asked about their challenges at current working place, ER PwMS about their last job and their reasons for stop working. Results: Statistically significant factors for employment were disease duration (p lessthan 0.001), EDSS (p lessthan 0.001) and educational level (p = 0.0237). According to MSWDQ, PwMS rated employment as very important, 48% of EM patients considered not to stop working or to change job completely (58%) and 40% did not plan to reduce work. According to WüScr PwMS were highly burdened by their disease. Perceived burden of work and workplace-related factors contributed to early retirement. Multivariable regression analyses showed the main symptoms associated with workplace difficulties: mobility/walking, pain, mood, balance, cognitive impairment, vision disturbances and fatigue. With regard to maintenance of employment, EM and ER patients requested adaptations of their work place such as better accessibility, flexible working time, less stress and more ergonomically designed elements. Conclusion: In order to keep PwMS longer in employment, the results of our study indicate that it is necessary to properly assess MS symptoms and treat them adequately, to optimize their work places, and to raise awareness among employers and colleagues for the special needs of PwMS.

Neuroscience offers new ways and levels to look into the functioning of our organisms. It thus can be used as a means to confirm or question psychological phenomena. In this article, the authors aim to view Carl Rogers's theory of personality and behavior in light of Antonio Damasio's theories and hypotheses concerning emotions, feelings, and conscious thought. The results indicate a tight correspondence of basic concepts and hypotheses such as the actualizing tendency and the vital role of feelings in thought. Furthermore, several ways accrue in which neuroscience and psychology complement one another in producing a more complete and, hence, reliable image of human functioning.