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1.
J Neurol ; 2020 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-32124042

RESUMO

BACKGROUND: Although multidisciplinary rehabilitation programs are commonly used in clinical practice for patients with multiple sclerosis (MS), they are currently underexamined. OBJECTIVE: This study aims to investigate the efficacy and underlying brain mechanisms of an inpatient multidisciplinary rehabilitation. METHODS: Twenty-four patients with relapse-onset MS underwent a 4-week personalized inpatient multidisciplinary rehabilitation and three assessment sessions including MRI, clinical, cognitive and motor function evaluation. Twenty-four healthy controls underwent two assessment sessions 4 weeks apart. Test performances were compared using repeated measures ANOVA, Tukey and t tests. A motor sequence learning (MSL) task was presented during fMRI and data were analysed using FSL. RESULTS: Patients had less perceived fatigue, improved walking speed and quality of life following the rehabilitation, which could be maintained at follow-up 4 weeks after rehabilitation. After rehabilitation, differences in accuracy of the MSL task between groups diminished, indicating an improved performance in patients. Improved accuracy went along with changes of brain activity in the left cerebellum and right frontal lobe post-rehabilitation, which could be maintained at follow-up. No changes between sessions were observed in controls. CONCLUSION: Multidisciplinary rehabilitation may improve highly impacting symptoms through more efficient recruitment of brain regions and therefore positively influence MS patients' quality of life.

2.
Physiol Meas ; 41(2): 025002, 2020 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-31972554

RESUMO

OBJECTIVE: Fatigue experienced by people with multiple sclerosis (pwMS) is multidimensional, consisting of different components, such as perceived, physical and cognitive fatigue and performance fatigability. At present, there is no gold standard to assess performance fatigability in pwMS; therefore, we aimed to determine whether, during a fatiguing task, average rectified value (ARV), mean frequency of the power spectrum (MNF), muscle fiber conduction velocity (CV) and fractal dimension (FD) of surface electromyography (sEMG) may be used as indirect indices of performance fatigability. Moreover, we analyzed whether a three-week rehabilitation program impacts on performance fatigability in pwMS, and whether a relationship between sEMG parameters and trait levels of perceived fatigability, before and after rehabilitation, does exist. APPROACH: Twenty-one pwMS performed a 20% maximal voluntary contraction (MVC) of 1 min, and afterwards a 60% MVC held until exhaustion. sEMG signals were detected from the biceps brachii, vastus medialis and vastus lateralis. Performance fatigability was determined at entry to (t 0) and discharge from (t 1) rehabilitation. Perceived fatigability was measured at t 0 and t 2, one month after rehabilitation. MAIN RESULTS: ARV, MNF, CV and FD rates of change showed significant changes at t 0 and t 1 (p < 0.05) during the high-level contraction in the BB, but rather limited in the vastii muscles. Moreover, rehabilitation did not induce any reductions in either perceived or performance fatigability. No significant correlations between ARV, MNF, CV and FD rates of change during the 60% MVC and perceived fatigability, at t 0 and t 2, were found. SIGNIFICANCE: Our findings suggest that the sEMG parameters are useful for indirectly assessing performance fatigability in pwMS during sub-maximal fatiguing contractions, particularly in the biceps brachii.

3.
Adv Ther ; 36(11): 3238-3252, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31487006

RESUMO

INTRODUCTION: Effective communication between patients and healthcare professionals (HCPs) is important to enhance outcomes in multiple sclerosis (MS). However, in practice, patients often report a disconnect in communication. Communication tools to aid patient-HCP communication have a long history of use in many chronic conditions. For example, symptom diaries have been shown to enhance outcomes in cancer, headache and sleep disorder management. MS in the 21st Century, a Steering Group of HCP specialists and patients with MS (PwMS), has created two communication tools designed for use by both patients and their HCPs. METHODS: The Steering Group first identified prominent issues in patient-HCP communication through group discussions and survey data. Following this, a series of workshops led to the development of two communication tools as potential solutions to these identified issues in communication. RESULTS: The two most prominent issues identified were HCP time constraints during appointments and the misalignment of patient and HCP priorities-the communication tools developed through the workshops were created to address these. The "myMS priorities" tool [see supplementary materials] is designed to maximize the use of consultation time while the "myMS commitments" tool [see supplementary materials] aims to improve patient-HCP shared decision-making. CONCLUSIONS: The MS in the 21st Century Steering Group adopted a broad, iterative and collaborative approach in the development of these tools to help ensure they would be as useful as possible to both HCPs and PwMS. These tools have been developed through shared patient-HCP expertise and are based on existing tools in other therapy areas as well as a review of the existing literature and data from MS in the 21st Century Steering Group surveys. The next steps will focus on the validation of these tools through testing them in real-world environments and clinical trials. FUNDING: Merck KGaA, Darmstadt, Germany.

4.
Mult Scler ; : 1352458518823955, 2019 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-31456464

RESUMO

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.

5.
Mult Scler Relat Disord ; 35: 26-33, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31280074

RESUMO

BACKGROUND: Multiple sclerosis (MS)-related fatigue limits participation in everyday activities and has a considerable impact on quality of life (QoL), thereby affecting productivity and employment. Outpatient education interventions involving energy conservation strategies and cognitive behavioral therapy techniques are helpful. However, no inpatient program is currently available. The inpatient energy management education (IEME) program is a novel group-based intervention that lasts for 6.5 h and is conducted by a trained occupational therapist (OT) during a 3-week period of inpatient rehabilitation. Persons with MS (pwMS) and OTs previously evaluated the IEME positively in a pilot study test run. The aim of this study was to evaluate the feasibility of a research protocol and collect preliminary data on the IEME effect size. METHODS: To assess the feasibility of conducting a randomized clinical trial, pwMS-related fatigue were recruited during a 3-week inpatient rehabilitation. Six IEME (experimental) group sessions or progressive muscle relaxation (PMR, control) group sessions comprised part of a personalized rehabilitation program. The recruitment and assessment procedures, dropout and follow-up assessment rates and the treatment fidelity were evaluated, and six telephone interviews were conducted with IEME participants after they returned home. Outcomes were fatigue impact, occupational performance, self-efficacy regarding energy conservation strategies, and QoL at baseline, discharge, and 4 months. Paired-sample and independent-samples t-tests were used to assess within- and between-group effects. Effect sizes were estimated using Cohen's d. RESULTS: Between August and November 2017, 47 pwMS were included and randomized. The dropout rate (4.2%) was low and the sample was balanced. The PMR was a well-accepted control intervention. The OTs reported no problems in conducting the IEME, and treatment fidelity was high. IEME participants confirmed the adequacy of the IEME. Within-group differences in fatigue impact and some QoL dimensions at discharge were significant (p < 0.05) in both groups. The IEME alone resulted in significant improvements in self-efficacy regarding energy conservation strategies, with a large effect size (Cohen's d: 1.32; 95% CI: 0.54-2.1), and in the QoL physical functioning dimension at T2 (Cohen's d: 1.32; 95% CI: 2.11-0.53). IEME participants spent significantly less time in individual OT sessions. A sample size of 192 participants in a randomized controlled trial would be sufficient to detect clinically relevant between-group differences. CONCLUSION: This feasibility study has provided promising preliminary data about the effect of the IEME. The research protocol was confirmed to be feasible and a future study is justified. This study was registered in the German Clinical Trials Register (no. DRKS00011634).

6.
Front Neurosci ; 13: 295, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31105510

RESUMO

Both anodal transcranial direct current stimulation (tDCS) of the left IFG and cathodal stimulation of the right IFG were shown to improve rehabilitation of stroke patients with Broca's aphasia. The study aimed at assessing the impact of a bihemispheric IFG stimulation compared to sham on postacute non-fluent aphasia. Twelve patients with non-fluent aphasia were included at least 4 weeks following cerebral stroke. Ten daily sessions of 2 mA bihemispheric verum or sham tDCS (anode on left IFG and cathode on right IFG) were performed concomitantly with individual language therapy in a double-blinded randomized controlled study with parallel group design. Language functions [i.e., communication (ANELT), picture naming and the Aachen aphasia test (AAT)] were assessed up to 1 month following tDCS. The picture naming task significantly improved (increased number of nouns) at the end of the tDCS procedure in the verum but not sham group. Improvements in the picture naming task and the communication task of the AAT at 4 weeks after tDCS procedure were only seen in the verum group. In patients with postacute cerebral stroke, repeated sessions of tDCS applied on both IFG concomitantly with language therapy were able to induce immediate effects on picture naming presumably due to an early left shift of language-associated function that maintained for 4 weeks. Effects on clinically relevant communicative abilities are likely.

7.
Mult Scler Relat Disord ; 28: 17-25, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30530118

RESUMO

BACKGROUND: Current guidelines recommend regular neurological MS care in persons diagnosed with MS, but little is known about implementation of this recommendation or potential access barriers. This study examined disease-specific and sociodemographic differences between MS patients in Neurological Care (NeC), General Practitioner Care (GPC), or no Physician Care (NoPC) to identify group differences and characteristics that may suggest care access barriers. METHODS: Patient-reported data were analyzed from 1038 Swiss Multiple Sclerosis Registry participants by means of multivariable regression to identify systematic differences across the three care groups. Assessments included comprehensive data on clinical, sociodemographic, and geographic factors. RESULTS: 89% reported being in regular care by a neurologist (56% in private practices, 44% in hospitals), 5% were in GPC, and 6% reported No Physician Care (NoPC). Compared with the NeC group, patients not seeing a neurologist included two subgroups, one consisting of persons with a primary progressive MS (PPMS) and/or an extended MS history. The second subgroup included persons with a recent MS diagnosis within the last 2 years. Within the NeC group, the patients seen in private practices were of older age and more frequently female compared to those at clinics, but no differences were detected with regard to disability status, MS type, or treatment patterns. CONCLUSIONS: Access to neurological care is high in Switzerland. Given the emerging paradigm for early treatment and new drugs for progressive MS, regular neurology visits should be promoted among patient groups currently less in neurological care such as persons with PPMS or recently diagnosed.


Assuntos
Assistência à Saúde , Esclerose Múltipla/terapia , Cobertura Universal do Seguro de Saúde , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/epidemiologia , Aceitação pelo Paciente de Cuidados de Saúde , Suíça
8.
Mult Scler J Exp Transl Clin ; 4(4): 2055217318814562, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30559972

RESUMO

Background: Recent studies emphasise the importance of timely diagnosis and early initiation of disease-modifying treatment in the long-term prognosis of multiple sclerosis. Objectives: The objective of this study was to investigate factors associated with extended time to diagnosis and time to disease-modifying treatment initiation in the Swiss Multiple Sclerosis Registry. Methods: We used retrospective data (diagnoses 1996-2017) of the survey-based Swiss Multiple Sclerosis Registry and fitted logistic regression models (extended time to diagnosis ≥2 years from first symptoms, extended time to disease-modifying treatment initiation ≥1 year from diagnosis) with demographic and a priori defined variables. Results: Our study, based on 996 persons with multiple sclerosis, suggests that 40% had an extended time to diagnosis, and extended time to disease-modifying treatment initiation was seen in 23%. Factors associated with extended time to diagnosis were primary progressive multiple sclerosis (odds ratio (OR) 5.09 (3.12-8.49)), diagnosis setting outside of hospital (neurologist (private practice) OR 1.54 (1.16-2.05)) and more uncommon first symptoms (per additional symptom OR 1.17 (1.06-1.30)). Older age at onset (per additional 5 years OR 0.84 (0.78-0.90)) and gait problems (OR 0.65 (0.47-0.89)) or paresthesia (OR 0.72 (0.54-0.95)) as first symptoms were associated with shorter time to diagnosis. Extended time to disease-modifying treatment initiation was associated with older age at diagnosis (per additional 5 years OR 1.18 (1.09-1.29)). In more recent years, time to diagnosis and time to disease-modifying treatment initiation tended to be shorter. Conclusions: Even in recent periods, substantial and partially systematic variation regarding time to diagnosis and time to disease-modifying treatment initiation remains. With the emerging paradigm of early treatment, the residual variation should be monitored carefully.

9.
Rehabil Nurs ; 43(6): E35-E41, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30395561

RESUMO

PURPOSE: Patient-centeredness, evidence-based interventions, and interdisciplinary teamwork have been described as key in neurological rehabilitation nursing. In order to develop future action plans, a group of Swiss rehabilitation nurses sought agreement on concrete principles that led the efforts to develop a common understanding of rehabilitation nursing care in Switzerland. DESIGN: A three-round Delphi study was conducted. METHODS: Literature-based statements were formulated and sent out twice to 54 rehabilitation nursing stakeholders. In the third round, the participants ranked the three most important statements out of 13. FINDINGS: Highest priority reached the statements: Rehabilitation nursing care (1) considers the uniqueness of the patients and their family, (2) offers support that promises the greatest potential for patients and their family, and (3) uses evidence-based knowledge. CONCLUSION: Statements on patient- and family-centeredness were ranked highest. Patients and families' preferences have to be considered as much as evidence-based knowledge and interventions to support patients and family. CLINICAL RELEVANCE: The study supported the discussion on action plans and enlivened new services and nursing interventions in a Swiss nursing community.


Assuntos
Enfermagem em Reabilitação/métodos , Adulto , Técnica Delfos , Prática Clínica Baseada em Evidências/métodos , Prática Clínica Baseada em Evidências/tendências , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/tendências , Enfermagem em Reabilitação/tendências , Suíça
10.
BMC Neurol ; 18(1): 111, 2018 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-30103695

RESUMO

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.


Assuntos
Pesquisa Biomédica/métodos , Esclerose Múltipla/epidemiologia , Participação do Paciente , Assistência Centrada no Paciente , Sistema de Registros , Adolescente , Adulto , Protocolos Clínicos , Humanos , Esclerose Múltipla/terapia , Estudos Prospectivos , Projetos de Pesquisa , Inquéritos e Questionários , Suíça/epidemiologia , Adulto Jovem
11.
Mult Scler Relat Disord ; 25: 112-121, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-30059895

RESUMO

BACKGROUND: MS symptoms affect many functional domains. Knowing the specific impact of symptoms on health-related quality of life (HRQoL) is vital for successful disease and symptom management in MS. We aimed at investigating how specific MS symptoms contribute to the disease burden in individuals and from a population perspective. METHODS: We included 855 Swiss Multiple Sclerosis Registry participants with a relapsing-remitting form (RRMS) or a progressive form (PMS). HRQoL was measured with the EuroQol 5-Dimension EQ-5D-index and EQ-Visual Analogue Scale (EQ-VAS) on 0-100% scales. Their associations with 20 symptoms, socio-demographic and clinical information were explored in median regression models, stratified by RRMS and PMS. RESULTS: We included 611 participants with RRMS and 244 with PMS. In RRMS, gait (-6.5%) and balance problems (-5.1%) had the largest EQ-5D-index reductions, and were also important at the population level (frequencies 45% and 52%). Fatigue, depression, and spasticity (frequencies 74.1%, 31%, 38%) also contributed to the population disease burden. In PMS, spasticity, paralysis, and bowel problems had the largest impact on EQ-5D-index, both at the individual and population levels. The largest impact on EQ-VAS at population level was associated in RRMS with balance problems, depression, dizziness, and spasticity, while in PMS with weakness, pain, and paralysis. CONCLUSIONS: While HRQoL at population level is most affected by balance problems, spasticity, and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity, paralysis, weakness, and pain. Many symptoms with the largest effects in individuals substantially contribute to the population disease burden.


Assuntos
Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Depressão/etiologia , Avaliação da Deficiência , Fadiga/epidemiologia , Fadiga/etiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Transtornos da Memória/etiologia , Pessoa de Meia-Idade , Esclerose Múltipla/epidemiologia , Parestesia/epidemiologia , Parestesia/etiologia , Análise de Regressão , Disfunções Sexuais Fisiológicas/etiologia , Inquéritos e Questionários , Suíça/epidemiologia , Escala Visual Analógica , Percepção Visual/fisiologia
12.
Swiss Med Wkly ; 148: w14623, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29767828

RESUMO

QUESTION UNDER STUDY: Our aim was to assess whether a novel approach of digitally facilitated, citizen-science research, as followed by the Swiss Multiple Sclerosis Registry (Swiss MS Registry), leads to accelerated participant recruitment and more diverse study populations compared with traditional research studies where participants are mostly recruited in study centres without the use of digital technology. METHODS: The Swiss MS Registry is a prospective, longitudinal, observational study covering all Switzerland. Participants actively contribute to the Swiss MS Registry, from defining research questions to providing data (online or on a paper form) and co-authoring papers. We compared the recruitment dynamics over the first 18 months with the a priori defined recruitment goals and assessed whether a priori defined groups were enrolled who are likely to be missed by traditional research studies. RESULTS: The goal to recruit 400 participants in the first year was reached after only 20 days, and by the end of 18 months 1700 participants had enrolled in the Swiss MS Registry, vastly exceeding expectations. Of the a priori defined groups with potential underrepresentation in other studies, 645 participants (46.5%) received care at a private neurology practice, 167 participants (12%) did not report any use of healthcare services in the past 12 months, 32 (2.3%) participants lived in rural mountainous areas, and 20 (2.0% of the 1041 for whom this information was available) lived in a long-term care facility. Having both online and paper options increased diversity of the study population in terms of geographic origin and type and severity of disease, as well as use of health care services. In particular, paper enrolees tended to be older, more frequently affected by progressive MS types and more likely to have accessed healthcare services in the past 12 months. CONCLUSION: Academic and industry-driven medical research faces substantial challenges in terms of patient involvement, recruitment, relevance and generalisability. Digital studies and stakeholder engagement may have enormous potential for medical research. But many digital studies are based on limited participant information and/or informed consent and unclear data ownership, and are subject to selection bias, confounding and information bias. The Swiss MS Registry serves as an example of a digitally enhanced, citizen-science study that leverages the advantages of both traditional medical research, with its established research methods, and novel societal and technological developments, while mitigating their ethical and legal disadvantages and risks.


Assuntos
Diversidade Cultural , Internet/estatística & dados numéricos , Participação do Paciente/métodos , Seleção de Pacientes , Adulto , Feminino , Humanos , Consentimento Livre e Esclarecido , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Estudos Prospectivos , Sistema de Registros , Suíça
13.
J Neuroimmunol ; 314: 101-105, 2018 01 15.
Artigo em Inglês | MEDLINE | ID: mdl-29224960

RESUMO

Disturbances in Tryptophan metabolism play a crucial role in multiple sclerosis (MS). Exercise is suspected to counteract the progress of MS and its side effects. Current research suggests alterations of Tryptophan metabolism in healthy individuals in response to exercise. We investigated the influence of acute aerobic exercise and training on Tryptophan metabolism in 57 inpatients with relapsing remitting ((RRMS) n=33) and secondary progressive ((SPMS) n=24) MS. Serotonin increased after training, whereas the kynurenine pathway was only activated in persons with RRMS. Further research is warranted to investigate whether these changes are associated with clinical measures (e.g. depressions and immune function).


Assuntos
Terapia por Exercício/métodos , Esclerose Múltipla Crônica Progressiva/metabolismo , Esclerose Múltipla Recidivante-Remitente/metabolismo , Triptofano/metabolismo , Adulto , Treino Aeróbico/métodos , Feminino , Humanos , Cinurenina/sangue , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla Crônica Progressiva/reabilitação , Esclerose Múltipla Recidivante-Remitente/reabilitação
14.
Scand J Caring Sci ; 32(1): 371-379, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28544132

RESUMO

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.


Assuntos
Comunicação , Recursos Humanos de Enfermagem no Hospital/psicologia , Vergonha , Acidente Vascular Cerebral/psicologia , Sobreviventes/psicologia , Incontinência Urinária/enfermagem , Incontinência Urinária/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Pesquisa Qualitativa , Suíça
15.
Mult Scler ; 24(12): 1635-1644, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-28825348

RESUMO

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.


Assuntos
Cognição , Terapia por Exercício/métodos , Treinamento Intervalado de Alta Intensidade/métodos , Esclerose Múltipla/reabilitação , Adulto , Fator Neurotrófico Derivado do Encéfalo/sangue , Feminino , Humanos , Masculino , Metaloproteinase 2 da Matriz/sangue , Metaloproteinase 9 da Matriz/sangue , Pessoa de Meia-Idade , Esclerose Múltipla/sangue
16.
Mult Scler Relat Disord ; 19: 153-160, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29241142

RESUMO

BACKGROUND: Patient engagement is vital in multiple sclerosis (MS) in order to optimise outcomes for patients, society and healthcare systems. It is essential to involve all stakeholders in potential solutions, working in a multidisciplinary way to ensure that people with MS (PwMS) are included in shared decision-making and disease management. To start this process, a collaborative, open environment between PwMS and healthcare professionals (HCPs) is required so that similarities and disparities in the perception of key areas in patient care and unmet needs can be identified. With this patient-centred approach in mind, in 2016 the MS in the 21st Century Steering Group formed a unique collaboration to include PwMS in the Steering Group to provide a platform for the patient voice. METHODS: The MS in the 21st Century initiative set out to foster engagement through a series of open-forum joint workshops. The aims of these workshops were: to identify similarities and disparities in the perception and prioritisation in three key areas (unmet needs, the treatment burden in MS, and factors that impact patient engagement), and to provide practical advice on how the gaps in perception and understanding in these key areas could be bridged. RESULTS: Combined practical advice and direction are provided here as eight actions: 1. Improve communication to raise the quality of HCP-patient interaction and optimise the limited time available for consultations. 2. Heighten the awareness of 'hidden' disease symptoms and how these can be managed. 3. Improve the dialogue surrounding the benefit versus risk issues of therapies to help patients become fully informed and active participants in their healthcare decisions. 4. Provide accurate, lucid information in an easily accessible format from reliable sources. 5. Encourage HCPs and multidisciplinary teams to acquire and share new knowledge and information among their teams and with PwMS. 6. Foster greater understanding and awareness of challenges faced by PwMS and HCPs in treating MS. 7. Collaborate to develop local education, communication and patient-engagement initiatives. 8. Motivate PwMS to become advocates for self-management in MS care. CONCLUSION: Our study of PwMS and HCPs in the MS in the 21st Century initiative has highlighted eight practical actions. These actions identify how differences and gaps in unmet needs, treatment burden, and patient engagement between PwMS and HCPs can be bridged to improve MS disease management. Of particular interest now are patient-centred educational resources that can be used during time-limited consultations to enhance understanding of disease and improve communication. Actively bridging these gaps in a joint approach enables PwMS to take part in shared decision-making; with improved communication and reliable information, patients can make informed decisions with their HCPs, as part of their own personalised disease management.


Assuntos
Efeitos Psicossociais da Doença , Tomada de Decisões , Gerenciamento Clínico , Educação , Esclerose Múltipla/terapia , Determinação de Necessidades de Cuidados de Saúde , Educação de Pacientes como Assunto , Participação do Paciente , Relações Profissional-Paciente , Adulto , Humanos
18.
J Neurol ; 264(3): 603-615, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27778158

RESUMO

The prevalence of disability due to neurological conditions is escalating worldwide. Neurological disorders have significant disability-burden with long-term functional and psychosocial issues, requiring specialized rehabilitation services for comprehensive management, especially treatments tapping into brain recovery 'neuroplastic' processes. Neurorehabilitation is interdisciplinary and cross-sectorial, requiring coordinated effort of diverse sectors, professions, patients and community to manage complex condition-related disability. This review provides evidence for a range of neurorehabilitation interventions for four common neurological conditions: multiple sclerosis (MS), stroke, traumatic brain injury and Parkinson's disease using the Grade of Recommendation, Assessment, Development and Evaluation tool for quality of evidence. Although, existing best-evidence for many interventions is still sparse, the overall findings suggest 'strong' evidence for physical therapy and psychological intervention for improved patient outcomes; and. 'moderate' evidence for multidisciplinary rehabilitation for longer term gains at the levels of activity (disability) and participation in MS and stroke population. The effect of other rehabilitation interventions is inconclusive, due to a paucity of methodologically robust studies. More research is needed to improve evidence-base for many promising rehabilitation interventions.


Assuntos
Reabilitação Neurológica/métodos , Lesões Encefálicas Traumáticas/fisiopatologia , Lesões Encefálicas Traumáticas/reabilitação , Prática Clínica Baseada em Evidências , Humanos , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/reabilitação , Plasticidade Neuronal , Doença de Parkinson/fisiopatologia , Doença de Parkinson/reabilitação , Acidente Vascular Cerebral/fisiopatologia
19.
J Neurol Sci ; 369: 185-190, 2016 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-27653887

RESUMO

OBJECTIVES: Previous studies have shown that anodal transcranial direct current stimulation (tDCS) of the left dorsolateral prefrontal cortex (DLPFC) led to an improvement of various cognitive functions in patients with Alzheimer dementia, early affected by short-term memory deficits. Since this approach has not been evaluated in the context of vascular dementia, which rather affects the velocity of cognitive responses, we aimed at improving these functions by applying repetitive sessions of anodal tDCS. METHODS: Four 20-minute sessions of 2mA anodal or sham at-home tDCS were applied to the left DLPFC in a single-blinded randomised study of 21 patients with mild vascular dementia, with parallel-group design. The effect of tDCS on cognitive testing was assessed up to two weeks beyond the stimulation time. RESULTS: A similar clinically meaningful improvement of various cognitive and behavioral dysfunction characteristics could be observed following either active or sham tDCS, whereas visual recall, and reaction times in the n-back task as well as in the go/no-go test improved only in the active tDCS group. CONCLUSIONS: In patients with mild vascular dementia, anodal tDCS of the left DLPFC is able to produce additional effects to cognitive training on visual short-term memory, verbal working memory, and executive control.


Assuntos
Demência Vascular/complicações , Transtornos da Memória/etiologia , Transtornos da Memória/terapia , Memória de Curto Prazo/fisiologia , Córtex Pré-Frontal/fisiologia , Estimulação Transcraniana por Corrente Contínua/métodos , Idoso , Idoso de 80 Anos ou mais , Função Executiva/fisiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Transtornos do Humor/etiologia , Testes Neuropsicológicos , Tempo de Reação/fisiologia , Estatísticas não Paramétricas
20.
Pflege ; 29(5): 235-245, 2016 09.
Artigo em Alemão | MEDLINE | ID: mdl-27239745

RESUMO

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.


Assuntos
Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/enfermagem , Incontinência Urinária/enfermagem , Enfermagem Baseada em Evidências , Humanos , Prognóstico , Qualidade de Vida/psicologia , Acidente Vascular Cerebral/fisiopatologia , Acidente Vascular Cerebral/psicologia , Treinamento no Uso de Toaletes , Estimulação Elétrica Nervosa Transcutânea/enfermagem , Incontinência Urinária/etiologia , Incontinência Urinária/fisiopatologia , Incontinência Urinária/psicologia , Urodinâmica/fisiologia
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