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1.
Mult Scler Relat Disord ; 87: 105661, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38728957

RESUMO

BACKGROUND: 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. OBJECTIVE: This study aimed to investigate associations between bladder problems and well-being of pwMS. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

2.
Ther Adv Neurol Disord ; 17: 17562864241239740, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38560408

RESUMO

Background: The spectrum of disease-modifying therapies (DMTs) for people with multiple sclerosis (PwMS) has expanded over years, but data on treatment strategies is largely lacking. DMT switches are common clinical practice. Objective: To compare switchers and non-switchers, characterize the first DMT switch and identify reasons and predictors for switching the first DMT. Methods: Data on 2722 PwMS from the German MS Registry were retrospectively analyzed regarding sociodemographic/clinical differences between 1361 switchers (PwMS discontinuing the first DMT) and non-switchers matched according to age, sex, and observation period. Frequencies of first and second DMTs were calculated and switch reasons identified. Predictors for DMT switches were revealed using univariable and multivariable regression models. Results: Switchers and non-switchers differed significantly regarding time to first DMT, education, calendar period of the first DMT start (2014-2017 versus 2018-2021), first DMT class used [mild-to-moderate efficacy (MME) versus high-efficacy (HE) DMT], time on first DMT, and disease activity at first DMT start or cessation/last follow-up. The majority of PwMS started with MME DMTs (77.1%), with the most common being glatiramer acetate, dimethyl/diroximel fumarate, and beta-interferon variants. Switchers changed treatment more often to HE DMTs (39.6%), most commonly sphingosine-1-phosphate receptor modulators, anti-CD20 monoclonal antibodies, and natalizumab. Fewer PwMS switched to MME DMTs (35.9%), with the most common being dimethyl/diroximel fumarate, teriflunomide, or beta-interferon. Among 1045 PwMS with sufficient data (76.8% of 1361 switchers), the most frequent reasons for discontinuing the first DMT were disease activity despite DMT (63.1%), adverse events (17.1%), and patient request (8.3%). Predictors for the first DMT switch were MME DMT as initial treatment [odds ratio (OR) = 2.83 (1.76-4.61), p < 0.001; reference: HE DMT], first DMT initiation between 2014 and 2017 [OR = 11.55 (6.93-19.94), p < 0.001; reference: 2018-2021], and shorter time on first DMT [OR = 0.22 (0.18-0.27), p < 0.001]. Conclusion: The initial use of MME DMTs was among the strongest predictors of DMT discontinuation in a large German retrospective MS cohort, arguing for the need for prospective treatment strategy trials, not only but also on the initial broad use of HE DMTs in PwMS.

3.
Mult Scler Relat Disord ; 82: 105353, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38194894

RESUMO

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Assuntos
Esclerose Múltipla , Bexiga Urinária , Humanos , Qualidade de Vida , Esclerose Múltipla/complicações , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/terapia , Consenso , Pessoal de Saúde
4.
Health Qual Life Outcomes ; 21(1): 110, 2023 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-37814258

RESUMO

BACKGROUND: Gait impairment is a relevant problem in persons with multiple sclerosis (pwMS). The Multiple Sclerosis Walking Scale 12 (MSWS-12) is a valid Patient Reported Outcome Measure (PROM) to evaluate walking ability in pwMS. The aim of this study was to provide a linguistically valid translation of MSWS-12 into German language (MSWS-12/D) and to evaluate its psychometric properties. METHODS: The MSWS-12 was translated in a process modified from guidelines for the cross-cultural adaption of PROMs, and a pre-test was applied in a small sample of 20 pwMS to evaluate comprehensibility and acceptance. Psychometric properties (floor and ceiling effects, internal consistency, construct validity) were then assessed in 124 pwMS seen at academic MS centers. Construct validity was evaluated against Expanded Disability Status Scale (EDSS) and maximum gait speed in the Timed 25-Foot Walk (T25FW). RESULTS: Although the sample covered a wide spectrum of symptom severity, the majority had rather low levels of disability (EDSS median 2.0) and 6.5% scored EDSS of 0. In this sample, MSWS-12/D showed floor effects (36% with score 0) and for internal consistency, a Cronbach's alpha of 0.98 was calculated. MSWS-12/D score showed a relevant correlation to EDSS (ρ = 0.73) and T25FW speed (r=-0.72). CONCLUSION: We provide MSWS-12/D as a linguistically valid German version of MSWS-12. Psychometric properties (acceptance, floor and ceiling effects, internal consistency and construct validity) in pwMS were similar to those described for the original version. This indicates that MSWS-12/D can be applied as equivalent to the original version in German speaking pwMS. Results support the relevance of PROMs to capture patient perception of walking ability in addition to performance-based assessments such as maximum walking speed or maximum walking distance.


Assuntos
Esclerose Múltipla , Humanos , Avaliação da Deficiência , Qualidade de Vida , Caminhada , Idioma , Reprodutibilidade dos Testes
5.
Mult Scler J Exp Transl Clin ; 8(2): 20552173221090653, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35496757

RESUMO

Background: People with Multiple Sclerosis (PwMS) suffer from an increased risk of unemployment during the course of the disease. In recent years progress has been made in increasing the time until patients have to leave the workforce permanently. Such a retirement is often associated with MS but the driving factors including disability progression, support measures at the workplace, and societal aspects are not yet fully understood. Methods: We consolidated data from four European MS databases from Germany, Poland, Sweden, and the United Kingdom, which were able to provide data on working status, disability progression and quality of life in accordance with the data harmonization framework of the EUReMS (European Registry in Multiple Sclerosis) project. Results: Factors strongly associated with unemployment are disability progression, low quality of life and being close to the statutory retirement age. Overall, highest employment rate (77%) and lowest effects of gender and disease duration were found in Sweden. Conclusions: We found remarkable differences between the European registers and the countries studied, which may indicate inequalities at European level. Furthermore, our findings suggest that it is feasible and useful to combine data from different MS registers in Europe, albeit the data structures are heterogeneous.

6.
Mult Scler Relat Disord ; 59: 103687, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35189580

RESUMO

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Assuntos
Transtornos Cognitivos , Esclerose Múltipla , Doenças Neurodegenerativas , Adulto , Transtornos Cognitivos/complicações , Fadiga/complicações , Fadiga/terapia , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Esclerose Múltipla/terapia , Testes Neuropsicológicos
7.
Wien Med Wochenschr ; 172(15-16): 383-391, 2022 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-35107651

RESUMO

The new study program "Multiple Sclerosis Management" is aimed at physicians, therapists, nurses, scientists, pharmacists, psychologists and biologists who want to specialize in the field of multiple sclerosis (MS). After successful accreditation in 2019, the first students have been in the master's program offered by Dresden International University (DIU) since 2020. Over a period of four semesters, it can be completed part-time and largely digitally. The master's program is divided into six modules focusing on basics, clinical and diagnostic aspects, MS studies and statistics, disease-modifying and symptomatic therapy, disease monitoring and documentation. The teaching includes theoretical parts and numerous practical units. A further goal is to derive therapeutic intervention plans and problem-solving strategies from scientific publications and clinical studies, to develop them further and to apply them in patient care. The lecturers come from Germany, Austria and Switzerland and are predominantly professors. The German Multiple Sclerosis Society is the patron of the course. This article presents the study program in detail.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/terapia , Alemanha , Universidades , Estudantes , Motivação , Currículo
8.
Diagnostics (Basel) ; 12(1)2022 Jan 13.
Artigo em Inglês | MEDLINE | ID: mdl-35054358

RESUMO

BACKGROUND: Multiple sclerosis patients often develop neurogenic lower urinary tract dysfunction with a potential risk of upper urinary tract damage. Diagnostic tools are urodynamics, bladder diary, uroflowmetry, and post-void residual, but recommendations for their use are controversial. OBJECTIVE: We aimed to identify clinical parameters indicative of neurogenic lower urinary tract dysfunction in multiple sclerosis patients. METHODS: 207 patients were prospectively assessed independent of the presence of lower urinary tract symptoms. We analyzed Expanded Disability Status Scale scores, uroflowmetry, post-void residual, rate of urinary tract infections, standardized voiding frequency, and voided volume in correlation with urodynamic findings. RESULTS: We found a significant correlation between post-void residual (odds ratio (OR) 4.17, confidence interval (CI) 1.20-22.46), urinary tract infection rate (OR 3.91, CI 1.13-21.0), voided volume (OR 4.53, CI 1.85-11.99), increased standardized voiding frequency (OR 7.40, CI 2.15-39.66), and urodynamic findings indicative of neurogenic lower urinary tract dysfunction. Expanded Disability Status Scale shows no correlation. Those parameters (except post-void residual) are also associated with reduced bladder compliance, as potential risk for kidney damage. CONCLUSION: Therefore, bladder diary and urinary tract infection rate should be routinely assessed to identify patients who require urodynamics.

9.
Neurol Ther ; 11(1): 319-336, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35020157

RESUMO

INTRODUCTIONS: Therapy switches in patients with multiple sclerosis (MS) receiving treatment with fingolimod occur frequently in clinical practice but are not well represented in real-world data. The aim of this study was to identify and characterize treatment switches and reveal sociodemographic/clinical changes over time in fingolimod-treated people with MS (PwMS). METHODS: Data on 2536 fingolimod-treated PwMS extracted from the German MS Registry during different time periods were analyzed (2010-2019). RESULTS: Overall, 28.3% of PwMS were treatment-naïve before fingolimod initiation. Interferon beta (30.7%) was the most common pre-fingolimod treatment. Ocrelizumab (19.8%) was the most frequent subsequent treatment in the 944 patients on fingolimod who switched. Between 2010 and 2019, median disease duration at fingolimod initiation decreased from 8.5 to 7.1 years (p < 0.001), and patients taking fingolimod for ≥ 1 year after treatment initiation decreased from 89.6 to 80.5% (p < 0.001). Females (p < 0.001) and young patients (p = 0.003) showed a shorter time on fingolimod. The most frequent reason for switching was disease activity (relapse/MRI) despite treatment. The annualized relapse rate increased from 0.37 in patients on fingolimod to 0.47 after treatment cessation, decreasing to 0.19 after treatment with a subsequent disease-modifying drug (DMD) was initiated. CONCLUSION: Treatment switches from fingolimod to subsequent DMDs currently occur after shorter treatment durations than 10 years ago, possibly due to the growing treatment spectrum. Planning adequate washout periods is essential and should be done on an individualized basis.

10.
Mult Scler ; 28(6): 865-871, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34449299

RESUMO

OBJECTIVE: To investigate the time to diagnosis in multiple sclerosis (MS) in Germany. METHODS: Analysis of real-world registry data from the German Multiple Sclerosis Registry (GMSR) and performing a primary analysis in patients where month-specific registration of the dates of onset and diagnosis was available. RESULTS: As of January 2020, data of a total of 28,658 patients with MS were extracted from the GMSR, with 9836 patients included in the primary analysis. The mean time to diagnosis was shorter following the introduction of the first magnetic resonance imaging (MRI)-based McDonald criteria in 2001. This effect was most pronounced in younger adults below the age of 40 years with relapsing onset multiple sclerosis (ROMS), with a decrease from 1.9 years in 2010 to 0.9 years in 2020, while unchanged in patients aged 40-50 years (1.4 years in 2010 and 1.3 years in 2020). In the limited number of paediatric onset MS patients, the time to diagnosis was longer and did not change (2.9 years). CONCLUSION: The current sensitive MRI-based diagnostic criteria have likely contributed to an earlier diagnosis of MS in Germany in younger adults aged 18-39 years with ROMS. Whether this translated to earlier initiation of disease-modifying treatment or had a beneficial effect on patient outcomes remains to be demonstrated.


Assuntos
Esclerose Múltipla , Adulto , Criança , Diagnóstico Precoce , Alemanha/epidemiologia , Humanos , Imageamento por Ressonância Magnética , Esclerose Múltipla/diagnóstico por imagem , Esclerose Múltipla/epidemiologia , Sistema de Registros
11.
Mult Scler Relat Disord ; 56: 103281, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34624644

RESUMO

BACKGROUND: The tailored immunomodulatory treatment strategy for secondary progressive multiple sclerosis (SPMS) depends on disease activity. OBJECTIVE: 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 METHODS: 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. RESULTS: 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). CONCLUSION: 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.


Assuntos
Esclerose Múltipla Crônica Progressiva , Esclerose Múltipla Recidivante-Remitente , Esclerose Múltipla , Idoso , Estudos de Coortes , Progressão da Doença , Alemanha/epidemiologia , Humanos , Esclerose Múltipla Crônica Progressiva/diagnóstico por imagem , Esclerose Múltipla Crônica Progressiva/epidemiologia , Esclerose Múltipla Crônica Progressiva/terapia , Sistema de Registros
12.
Sci Rep ; 11(1): 13340, 2021 06 25.
Artigo em Inglês | MEDLINE | ID: mdl-34172792

RESUMO

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.


Assuntos
Esclerose Múltipla/epidemiologia , Adulto , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Probabilidade , Sistema de Registros
13.
J Neurol ; 268(12): 4809-4815, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34003370

RESUMO

BACKGROUND: Fatigue is one of the most frequent symptoms in patients with multiple sclerosis (MS), causing a major impact on quality-of-life. Non-pharmacological intervention strategies involve physical activity, which has been shown to reduce fatigue. Training under normobaric hypoxic conditions is thought to improve the response to endurance training and may, therefore, have an additional benefit over normoxic training conditions in MS patients. OBJECTIVE: To compare the effects of endurance training under hypoxic and normoxic conditions on fatigue, mobility and spasticity in patients with MS during inpatient rehabilitation. METHODS: Thirty-nine patients with MS were assigned within a randomized prospective longitudinal pilot study to (1) a routine clinical rehabilitation program, (2) a routine clinical rehabilitation program + normoxic endurance training and (3) a routine clinical rehabilitation program + hypoxic endurance training for 14 days. Fatigue (WEIMuS and MFIS), spasticity (MSSS-88) and walking endurance (6MinWT) were assessed at days 0, 7 and 14. RESULTS: Fatigue scores improved significantly in all groups, but these improvements were reached faster in the groups which additionally received endurance training (normoxic p = 0.004; hypoxic p = 0.002). Spasticity scores were significantly lower in endurance training groups at the end of the study compared to baseline (normoxic p = 0.048, hypoxic p = 0.012), while only the hypoxic group increased significantly in 6MinWT (p = 0.001). CONCLUSIONS: Our findings demonstrate that endurance training provides substantial benefit to neurological rehabilitation programs. Endurance training under hypoxic conditions could positively influence walking endurance within a 2-week training intervention and warrants further investigations.


Assuntos
Treino Aeróbico , Esclerose Múltipla , Terapia por Exercício , Fadiga/etiologia , Fadiga/terapia , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Projetos Piloto , Estudos Prospectivos
14.
Nervenarzt ; 92(4): 349-358, 2021 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-33399923

RESUMO

BACKGROUND: In the clinical management of patients with multiple sclerosis (MS), the challenge is to make an early diagnosis and initiate adequate treatment of neurogenic disorders of the lower urinary tract (NLUTD). Various national guidelines provide practical recommendations which are sometimes discordant. OBJECTIVE: To develop a simple evidence-based algorithm for detecting NLUTD in patients with MS that could be taken as a principle for deriving therapeutic consequences. MATERIAL AND METHODS: A prospective multicenter study was initiated as a direct result of two multidisciplinary conferences. The aim was to identify statistically and clinically relevant parameters for the routine diagnosis of NLUTD in patients with MS. Urodynamic abnormalities served as the gold standard. At three subsequent consensus conferences, the results of the study were discussed, a diagnostic algorithm was developed and consensus was reached on a first-line treatment. RESULTS AND DISCUSSION: The proposed algorithm enables the detection of NLUTD in patients with MS with the help of four statistically significant predictors: 1) the residual urine volume, 2) the number of urinary tract infections (UTI) within the last 6 months, 3) the standardized micturition frequency and 4) the presence/absence of urinary incontinence. The newly developed algorithm has proved to be efficient with the following results: approximately 75% of the patients do not need a urodynamic examination for a first-line treatment decision. In 25% of cases, urodynamic examinations are essential for an adequate treatment decision. Routine assessments include the patient medical history, residual urine volume measurement, a micturition diary and a uroflowmetry (optional).


Assuntos
Esclerose Múltipla , Doenças Urológicas , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/diagnóstico , Estudos Prospectivos , Urodinâmica
15.
Artigo em Inglês | MEDLINE | ID: mdl-33322833

RESUMO

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.


Assuntos
Atividades Cotidianas , Monitores de Aptidão Física , Smartphone , Acelerometria , Adulto , Algoritmos , Feminino , Humanos , Masculino , Caminhada , Adulto Jovem
16.
Artigo em Inglês | MEDLINE | ID: mdl-33291585

RESUMO

The two-minute walk test (2MWT) is a frequently used walking capacity test in persons with multiple sclerosis (pwMS). However, less is known about its relevance with regards to walking capacity during free-living walking performance. Therefore, the ecological validity of the 2MWT was tested by 1. computing free-living minutes with the same intensity (cadence) as during the 2MWT and 2. investigating the relationship between 2MWT cadence and minutes with the same cadence during free-living walking. 20 pwMS aged 44.2 ± 12.2 (Expanded Disability Status Scale (EDSS) score of 3.1 ± 1.4) performed a 2MWT and wore an accelerometer for seven days. The number of pwMS reaching 100%, 90%, 80% or 70% of 2MWT cadence for at least one minute a day and minutes/day with at least 100%, 90%, 80% and 70% of 2MWT cadence during free-living walking was calculated. Six participants reached 100% of the 2MWT cadence for at least one minute/day during free-living walking. A total of 80% 2MWT cadence was the first intensity category that was reached by all participants during free-living walking. No significant correlation was found between cadence in the 2MWT and minutes in which this cadence was reached during free-living walking. Ecological validity with regard to walking intensity could not be confirmed in our study sample.


Assuntos
Esclerose Múltipla , Envio de Mensagens de Texto , Teste de Caminhada , Adulto , Feminino , Humanos , Decoração de Interiores e Mobiliário , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/fisiopatologia , Caminhada
19.
Mult Scler Relat Disord ; 46: 102485, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32980646

RESUMO

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.


Assuntos
Esclerose Múltipla , Doenças Neurodegenerativas , Avaliação da Deficiência , Progressão da Doença , Feminino , Humanos , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/epidemiologia , Fatores de Tempo
20.
Artigo em Inglês | MEDLINE | ID: mdl-32599767

RESUMO

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: 64 of 84 PwMS were analyzed (IG: 34, CG: 30). After rehabilitation, fatigue decreased in both groups. At T2 and T3, fatigue increased again in CG but was improved in IG (p < 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.


Assuntos
Terapia por Exercício , Internet , Esclerose Múltipla , Exercício Físico , Fadiga , Humanos , Pacientes Internados , Esclerose Múltipla/reabilitação , Qualidade de Vida , Método Simples-Cego
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