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BACKGROUND AND PURPOSE: Regular physical activity (PA) helps to reduce the severity of physical and mental symptoms and improves quality of life in people with multiple sclerosis (PwMS). Based on current evidence and expert opinion, the recent multiple sclerosis guidelines recommend at least 150 minutes/week of PA. This study presents the results of a survey analyzing whether and how PwMS met the guidelines before and during the pandemic. METHODS: We developed and disseminated an international online survey between December 2020 and July 2021, investigating changes in self-reported PA type, duration, frequency, and intensity due to the COVID-19 outbreak in PwMS with differing disability levels. RESULTS: Among respondents (n = 3810), 3725 were eligible. The proportion of those who conducted at least one activity decreased with increasing disability level at both time points (pre and during). Overall 60% of respondents met the guidelines before the pandemic (mild: 64.43%; moderate: 51.53%; severe: 39.34%; χ 2(2) = 109.13, P < 0.01); a reduction of approximately 10% occurred during the pandemic in all disability groups (mild: 54.76%; moderate: 42.47%; severe: 29.48%; χ 2(2) = 109.67, P < 0.01). Respondents with higher disability participated more in physical therapy and less in walking, cycling, and running at both time points. Most respondents reported practicing PA at a moderate intensity at both time points; frequency and duration of sessions decreased as disability level increased. DISCUSSION AND CONCLUSIONS: The percentage of those meeting the guidelines reduced with increasing disability level and during the pandemic. PA type and intensity varied widely across the disability categories. Interventions accounting for disability level are required to enable more PwMS to reap the benefits of PA.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A415 ).
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COVID-19 , Esclerosis Múltiple , Humanos , Pandemias , Calidad de Vida , COVID-19/prevención & control , Ejercicio FísicoRESUMEN
OBJECTIVE: To investigate the impact of the COVID-19 pandemic on physical activity in persons with multiple sclerosis (PwMS). DESIGN: Multicenter international online survey study. SETTING: The survey was conducted within 11 participating countries. Each country launched the survey using online platforms from May to July 2021. PARTICIPANTS: This was an electronic survey study targeting PwMS (N=3725). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The survey ascertained physical activity performance and its intensity, the nature of the activities conducted, and the use of technology to support home-based physical activity before and during the pandemic. RESULTS: A total of 3725 respondents completed the survey. Prepandemic, the majority (83%) of respondents reported being physically active, and this decreased to 75% during the pandemic. This change was significant for moderate- and high-intensity activity (P<.0001). Activities carried out in physiotherapy centers, gyms, or pools decreased the most. Walking was the most frequently performed activity prepandemic (27%) and increased during the pandemic (33%). A total of 24% of those inactive during the pandemic had no intention of changing their physical activity behavior post pandemic. A total of 58% of the respondents did not use technology to support physical activity during the pandemic. Of those who did use technology, wearables were most used (24%). Of those currently nonactive (25%) expressed a preference for an in-person format to conduct physical activity post pandemic. CONCLUSIONS: Physical activity performance, especially activities at moderate and high intensities, decreased during the pandemic in PwMS compared with prepandemic. Walking and using wearables gained popularity as ways to stay active. As we move toward an endemic COVID-19, a call for action to develop interventions focused on walking programs with specific emphasis on increasing physical activity of PwMS is proposed.
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COVID-19 , Esclerosis Múltiple , Ejercicio Físico , Humanos , Pandemias , Encuestas y Cuestionarios , TecnologíaRESUMEN
BACKGROUND: The aim was to investigate predictive values of coping styles, clinical and demographic factors on time to unemployment in patients diagnosed with multiple sclerosis (MS) during 1998-2002 in Norway. METHOD: All patients ( N = 108) diagnosed with MS 1998-2002 in Hordaland and Rogaland counties, Western Norway, were invited to participate in the long-term follow-up study in 2002. Baseline recordings included disability scoring (Expanded Disability Status Scale (EDSS)), fatigue (Fatigue Severity Scale (FSS)), depression (Beck Depression Inventory (BDI)), and questionnaire assessing coping (the Dispositional Coping Styles Scale (COPE)). Logistic regression analysis was used to identify factors associated with unemployed at baseline, and Cox regression analysis to identify factors at baseline associated with time to unemployment during follow-up. RESULTS: In all, 41 (44%) were employed at baseline. After 13 years follow-up in 2015, mean disease duration of 22 years, 16 (17%) were still employed. Median time from baseline to unemployment was 6 years (±5). Older age at diagnosis, female gender, and depression were associated with patients being unemployed at baseline. Female gender, long disease duration, and denial as avoidant coping strategy at baseline predicted shorter time to unemployment. CONCLUSION: Avoidant coping style, female gender, and longer disease duration were associated with shorter time to unemployment. These factors should be considered when advising patients on MS and future employment.
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Adaptación Psicológica , Esclerosis Múltiple Crónica Progresiva/psicología , Esclerosis Múltiple Recurrente-Remitente/psicología , Desempleo , Adulto , Factores de Edad , Costo de Enfermedad , Depresión/psicología , Evaluación de la Discapacidad , Femenino , Humanos , Seguro por Discapacidad , Modelos Logísticos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple Crónica Progresiva/diagnóstico , Esclerosis Múltiple Crónica Progresiva/fisiopatología , Esclerosis Múltiple Recurrente-Remitente/diagnóstico , Esclerosis Múltiple Recurrente-Remitente/fisiopatología , Análisis Multivariante , Noruega , Oportunidad Relativa , Pensiones , Modelos de Riesgos Proporcionales , Estudios Prospectivos , Factores de Riesgo , Factores Sexuales , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
BACKGROUND: Understanding the organisational set-up of physiotherapy services across different countries is increasingly important as clinicians around the world use evidence to improve their practice. This also has to be taken into consideration when multi-centre international clinical trials are conducted. This survey aimed to systematically describe organisational aspects of physiotherapy services for people with multiple sclerosis (MS) across Europe. METHODS: Representatives from 72 rehabilitation facilities within 23 European countries completed an online web-based questionnaire survey between 2013 and 2014. Countries were categorised according to four European regions (defined by United Nations Statistics). Similarities and differences between regions were examined. RESULTS: Most participating centres specialized in rehabilitation (82 %) and neurology (60 %), with only 38 % specialising in MS. Of these, the Western based Specialist MS centres were predominately based on outpatient services (median MS inpatient ratio 0.14), whilst the Eastern based European services were mostly inpatient in nature (median MS inpatient ratio 0.5). In almost all participating countries, medical doctors - specialists in neurology (60 %) and in rehabilitation (64 %) - were responsible for referral to/prescription of physiotherapy. The most frequent reason for referral to/prescription of physiotherapy was the worsening of symptoms (78 % of centres). Physiotherapists were the most common members of the rehabilitation team; comprising 49 % of the team in Eastern countries compared to approximately 30 % in the rest of Europe. Teamwork was commonly adopted; 86 % of centres based in Western countries utilised the interdisciplinary model, whilst the multidisciplinary model was utilised in Eastern based countries (p = 0.046). CONCLUSION: This survey is the first to provide data about organisational aspects of physiotherapy for people with MS across Europe. Overall, care in key organisational aspects of service provision is broadly similar across regions, although some variations, for example the models of teamwork utilised, are apparent. Organisational framework specifics should be considered anytime a multi-centre study is conducted and results from such studies are applied.
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Esclerosis Múltiple/terapia , Modalidades de Fisioterapia/organización & administración , Atención Ambulatoria/estadística & datos numéricos , Europa (Continente) , Humanos , Pacientes Internos , Grupo de Atención al Paciente/organización & administración , Prescripciones , Derivación y Consulta/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
BACKGROUND: The COVID-19 pandemic has led to reorganization or reduction of neurorehabilitation services for people with multiple sclerosis (PwMS). The aim of this study was to explore the changes in the organizational framework and technology usage in physiotherapy services for PwMS during the COVID-19 pandemic. METHODS: This international cross-sectional survey study was designed, developed, and disseminated by RIMS European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation. Physiotherapists from nine countries (Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Spain, Turkey) who provided physiotherapy services to PwMS, were invited to complete an online survey to compare physiotherapy delivery to PwMS prior to and during the pandemic period. RESULTS: The survey was completed by 215 physiotherapists. Accessibility, the average number, length and perceived effectiveness of physiotherapy sessions provided to PwMS were significantly reduced during the COVID-19 pandemic (p=0.001). Physiotherapists increased the advice of mobile apps, recorded videos for rehabilitation and exercise websites during the pandemic (p<0.001) while the use of telerehabilitation and virtual reality technology did not change. CONCLUSION: There was of a reduction in the number, duration and perceived effectiveness of rehabilitation sessions for people with multiple sclerosis during the COVID-19 pandemic while use of remote technologies for physiotherapy did not change. To ensure the continuity of physiotherapy for PwMS with complex healthcare needs also during pandemics, the provision of guidelines and training in telehealth technologies in professional education becomes crucial.
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COVID-19 , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/terapia , Pandemias , Estudios Transversales , Modalidades de FisioterapiaRESUMEN
BACKGROUND: The impact of the COVID-19 pandemic on physical therapy services for people with multiple sclerosis (pwMS) is unknown. Therefore, the Special Interest Group for Mobility (SIG Mobility) of the European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation (RIMS) has undertaken the initiative to examine the impact of the COVID-19 outbreak on physical therapy services and physical activity participation in pwMS across Europe, Israel and Australia. OBJECTIVE: To describe the impact of the COVID-19 outbreak on physical therapy practice from the perspective of the therapist. METHODS: An online survey was developed and conducted from December 2020 to July 2021. The survey (50 questions), included multiple-choice questions and open-ended responses. RESULTS: In total, 215 physical therapists (PT's) from 9 countries (Australia, Belgium, the Czech Republic, Ireland, Israel, Italy, Norway, Spain, and Turkey) participated in the study. The therapy most affected during the pandemic was aerobic training/conditioning exercises; 33.5% reported that these activities were either reduced or unavailable. In contrast, 15% of the PTs reported increased use of relaxation/mind body techniques and/or fatigue management programs during the pandemic. PTs reported a mixture of positive and negative feelings about the therapeutic sessions offered during the pandemic. Most reported positive feelings included "positive" (26.5%), and "optimistic" (24.7%). Negative feelings most frequently reported included "worried" (30.7%), and "hesitant" (20.9%). The PTs reported a 10% decrease in the use of hands-on techniques and a 10% increase in the use of oral instructions when treating moderately and severely pwMS during as compared to before the pandemic. CONCLUSION: The COVID-19 pandemic has affected physical therapy services in pwMS internationally in terms of content, frequency of use and format.
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COVID-19 , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/rehabilitación , Esclerosis Múltiple/terapia , Pandemias , Modalidades de Fisioterapia , Encuestas y CuestionariosRESUMEN
BACKGROUND: The 12-item Multiple Sclerosis Walking Scale (MSWS-12) is currently the most widely validated, patient-reported outcome measure assessing patients' perception of the impact of multiple sclerosis (MS) on walking ability. To date, the majority of previous studies investigating the MSWS-12 have focused on the total score despite individual items being potentially informative. Therefore, our objective was to examine the associations between the individual items of the MSWS-12 and mobility and whether these associations depend on disability level. METHODS: Participants completed the MSWS-12, Two-Minute Walk Test (2MWT), Timed 25-Foot Walk (T25FW), Timed Up and Go Test (TUG) and the Four Square Step Test (FSST). Subsequently, they were divided into two groups according to their disability level, classified as either "mildly" or "moderately-severely" disabled. The correlation between individual items of the MSWS-12 and clinical measures of mobility were separately examined by Spearman's correlation coefficients; linear regression analyses were performed for each disability group, with/without adjusting for cognition, age and gender. RESULTS: 242 people with MS (PwMS), 108 mildly and 134 moderately-severely disabled, were included. Stronger correlations between the MSWS-12 items and mobility tests were found in the mildly disabled compared to the moderately-severely disabled group. The linear regression analysis showed that in the mildly disabled, item 9 (use of support outdoors) explained 35.4%, 30.8%, and 23.7% of the variance related to the 2MWT, T25FW and TUG, respectively. As for the moderately-severely disabled, the linear regression analysis presented a model which included item 8 (use of support indoors), explaining 31.6%, 18.0%, 20.2% and 9.5% of the variance related to the 2MWT, T25FWT, TUG and FSST, respectively. CONCLUSIONS: Items 8 and 9 of the MSWS-12 focusing on the patient's use of walking support in and outdoors, provide a robust indicator of mobility capabilities for mildly and moderately-severely disabled PwMS.
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Esclerosis Múltiple , Caminata , Evaluación de la Discapacidad , Humanos , Esclerosis Múltiple/diagnóstico , Equilibrio Postural , Estudios de Tiempo y MovimientoRESUMEN
Goal setting is a core component of physical therapy in multiple sclerosis (MS). It is unknown whether and to what extent goals are set at different levels of the International Classification of Functioning, Disability and Health (ICF), and whether, and to which, standardized outcome measures are used in real life for evaluation at the different ICF levels. Our aim was to describe the real-world use of goal setting and outcome measures in Europe. An online cross-sectional survey, completed by 212 physical therapists (PTs) specialized in MS from 26 European countries, was conducted. Differences between European regions and relationships between goals and assessments were analyzed. PTs regularly set goals, but did not always apply the Specific, Measurable, Achievable, Realistic, Timed (SMART) criteria. Regions did not differ in the range of activities assessed, but in goals set (e.g., Western and Northern regions set significantly more goals regarding leisure and work) and outcome measures used (e.g., the Berg Balance Scale was more frequently used in Northern regions). Quality of life was not routinely assessed, despite being viewed as an important therapy goal. Discrepancies existed both in goal setting and assessment across European regions. ICF assists in understanding these discrepancies and in guiding improved health-care for the future.
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Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Esclerosis Múltiple/terapia , Modalidades de Fisioterapia , Estudios Transversales , Evaluación de la Discapacidad , Europa (Continente) , Objetivos , Humanos , Evaluación de Resultado en la Atención de Salud , Encuestas y CuestionariosRESUMEN
Background: Guidelines and general recommendations are available for multiple sclerosis rehabilitation, but no specific guidance exists for physical therapists. Describing aspects of physical therapy content and delivery in multiple sclerosis and its determinants and analysing whether general recommendations connected with physical therapy are implemented in practice is important for interpreting clinical and research evidence. Methods: An online cross-sectional survey of physical therapists specialized in multiple sclerosis (212 specialists from 26 European countries) was used. Results: There was distinct diversity in service delivery and content across Europe. Perceived accessibility of physical therapy varied from most accessible in the Western region, and least in the Southern region. Sixty-four physical therapists adjusted their approach according to different disability levels, less so in the Eastern region. Duration, frequency and dose of sessions differed between regions, being highest in Southern and Western regions. "Hands on treatment" was the most commonly used therapeutic approach in all apart from the Northern regions, where "word instruction" (providing advice and information) prevailed. Conclusions: The content and delivery of physical therapy differs across Europe. Recommendations concerning access to treatment and adjustment according to disability do not appear to be widely implemented in clinical practice.
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Atención a la Salud , Esclerosis Múltiple , Modalidades de Fisioterapia , Adulto , Estudios Transversales , Atención a la Salud/estadística & datos numéricos , Europa (Continente) , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/terapia , Encuestas y Cuestionarios , Adulto JovenAsunto(s)
Esclerosis Múltiple/fisiopatología , Examen Neurológico/normas , Caminata , Femenino , Humanos , MasculinoRESUMEN
BACKGROUND: Physical rehabilitation programs can lead to improvements in mobility in people with multiple sclerosis (PwMS). OBJECTIVE: To identify which rehabilitation program elements are employed in real life and how they might affect mobility improvement in PwMS. METHODS: Participants were divided into improved and nonimproved mobility groups based on changes observed in the Multiple Sclerosis Walking Scale-12 following multimodal physical rehabilitation programs. Analyses were performed at group and subgroup (mild and moderate-severe disability) levels. Rehabilitation program elements included setting, number of weeks, number of sessions, total duration, therapy format (individual, group, autonomous), therapy goals, and therapeutic approaches. RESULTS: The study comprised 279 PwMS from 17 European centers. PwMS in the improved group received more sessions of individual therapy in both subgroups. In the mildly disabled group, 60.9% of the improved received resistance training, whereas, 68.5% of the nonimproved received self-stretching. In the moderately-severely disabled group, 31.4% of the improved, received aerobic training, while 50.4% of the nonimproved received passive mobilization/stretching. CONCLUSIONS: We believe that our findings are an important step in opening the black-box of physical rehabilitation, imparting guidance, and assisting future research in defining characteristics of effective physical rehabilitation.
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Esclerosis Múltiple/rehabilitación , Caminata , Adulto , Evaluación de la Discapacidad , Europa (Continente) , Prueba de Esfuerzo , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
BACKGROUND: Physical rehabilitation can improve walking capacity in persons with multiple sclerosis (MS). However, changes in spatiotemporal gait parameters after rehabilitation are not frequently evaluated, and it is unknown to what extent potential effects depend on baseline disability level. The objective was to investigate the effectiveness of rehabilitation programs on gait parameters at usual and fastest speeds in persons with MS categorized according to walking speed. METHODS: This nonrandomized multinational study in "real-world" settings evaluated participants before and after conventional rehabilitation. Outcome measurements included spatiotemporal gait parameters assessed by an electronic walkway (at usual and fastest speeds), walking capacity tests (Timed 25-Foot Walk test, 2-Minute Walk Test, 6-Minute Walk Test), and the patient-reported 12-item Multiple Sclerosis Walking Scale. Patients were allocated into three subgroups based on walking speed (<0.82 m/s and >1.14 m/s) and MS center. Results were calculated for the total group and subgroups. RESULTS: Forty-two persons with MS (26 women; mean ± SD age, 44.6 ± 11.0 years; mean ± SD Expanded Disability Status Scale score, 3.5 ± 1.5) receiving rehabilitation treatment were enrolled. After rehabilitation treatment, the group demonstrated a significant decrease in double support time and an increase in stride length and step length (left leg) at usual and fastest speeds. Velocity and step length (right leg) increased only at usual speed. Subgroup analysis revealed greatest and clinically meaningful improvements in more disabled persons with MS. CONCLUSIONS: Physical rehabilitation induced changes in spatiotemporal gait parameters in persons with MS. The magnitude of improvement was greater in participants with more walking impairment.
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OBJECTIVE: To determine responsiveness of functional mobility measures, and provide reference values for clinically meaningful improvements, according to disability level, in persons with multiple sclerosis (pwMS) in response to physical rehabilitation. METHODS: Thirteen mobility measures (clinician- and patient-reported) were assessed before and after rehabilitation in 191 pwMS from 17 international centers (European and United States). Combined anchor- and distribution-based methods were used. A global rating of change scale, from patients' and therapists' perspective, served as external criteria when determining the area under the receiver operating characteristic curve (AUC), the minimally important change (MIC), and the smallest real change (SRC). Patients were stratified into 2 subgroups based on disability level (Expanded Disability Status Scale score ≤4 [n = 72], >4 [n = 119]). RESULTS: The Multiple Sclerosis Walking Scale-12, physical subscale of the Multiple Sclerosis Impact Scale-29 (especially for the mildly disabled pwMS), Rivermead Mobility Index, and 5-repetition sit-to-stand test (especially for the moderately to severely disabled pwMS) were the most sensitive measures in detecting improvements in mobility. Findings were determined once the AUC (95% confidence interval) was above 0.5, MIC was greater than SRC, and results were comparable from the patient and therapist perspective. CONCLUSIONS: Responsiveness, clinically meaningful improvement, and real changes of frequently used mobility measures were calculated, showing great heterogeneity, and were dependent on disability level in pwMS.
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Terapia por Ejercicio/métodos , Actividad Motora/fisiología , Esclerosis Múltiple/rehabilitación , Resultado del Tratamiento , Adulto , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: A wide variety of interventions exists in physical therapy (PT), but knowledge about their use across different geographical regions is limited. This study investigated the use of PT interventions in people with multiple sclerosis (MS) across Europe. It aimed to determine whether regions differ in applying interventions, and explore whether factors other than regions play a role in their use. METHODS: In an online cross-sectional survey, 212 respondents from 115 European workplaces providing PT services to people with MS representing 26 countries (four European regions) participated. Cluster analysis, Pearson Chi-squared test and a Poisson regression model were used to analyze the data. RESULTS: Thirteen of 45 listed PT interventions were used by more than 75% of centers, while nine interventions were used by less than 25%. For 12 interventions, regions differed markedly in their use. Cluster analysis of centers identified four clusters similar in their intervention use. Cluster assignment did not fully align with regions. While center region was important, center size, number and gender of physical therapists working in the center, and time since qualification also played a role. Cluster analysis exploring the use of the interventions provided the basis for a categorization of PT interventions in line with their primary focus: 1. Physical activity (fitness/endurance/resistance) training; 2. Neuroproprioceptive "facilitation/inhibition"; 3. Motor/skill acquisition (individualized therapy led); 4. Technology based interventions. CONCLUSIONS: To our knowledge this is the first study that has explored this topic in MS. The results broaden our understanding of the different PT interventions used in MS, as well as the context of their use.
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Esclerosis Múltiple/terapia , Modalidades de Fisioterapia , Análisis por Conglomerados , Estudios Transversales , Europa (Continente) , Femenino , Humanos , Masculino , Análisis de RegresiónRESUMEN
BACKGROUND AND PURPOSE: Patients with multiple sclerosis (MS) tend to have movement difficulties, and the effect of physiotherapy for this group of patients has been subjected to limited systematic research. In the present study physiotherapy based on the Bobath concept, applied to MS patients with balance and gait problems, was evaluated. The ability of different functional tests to demonstrate change was evaluated. METHOD: A single-subject experimental study design with ABAA phases was used, and two patients with relapsing-remitting MS in stable phase were treated. Tests were performed 12 times, three at each phase: A (at baseline); B (during treatment); A (immediately after treatment); and A (after two months). The key feature of treatment was facilitation of postural activity and selective control of movement. Several performance and self report measures and interviews were used. RESULTS: After intervention, improved balance was shown by the Berg Balance Scale (BBS) in both patients, and improved quality of gait was indicated by the Rivermead Visual Gait Assessment (RVGA). The patients also reported improved balance and gait function in the interviews and scored their condition as 'much improved'. Gait parameters, recorded by an electronic walkway, changed, but differently in the two patients. Among the physical performance tests the BBS and the RVGA demonstrated the highest change, while no or minimal change was demonstrated by the Rivermead Mobility Index (RMI) and Ratings of Perceived Exertion (RPE). CONCLUSION: The findings indicate that balance and gait can be improved after physiotherapy based on the Bobath concept, but this should be further evaluated in larger controlled trials of patients with MS.
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Marcha/fisiología , Esclerosis Múltiple/rehabilitación , Modalidades de Fisioterapia , Equilibrio Postural/fisiología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
PURPOSE: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. METHOD: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. RESULTS: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became "colleagues". This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. CONCLUSION: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other's resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment. Implications for Rehabilitation In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially. Stigmatization is commonly experienced among people with MS. The recognition experienced from peers create a sense of community. We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.
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Adaptación Psicológica , Esclerosis Múltiple/psicología , Esclerosis Múltiple/rehabilitación , Poder Psicológico , Autoimagen , Femenino , Grupos Focales , Humanos , Pacientes Internos/psicología , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Noruega , Investigación Cualitativa , Identificación Social , EstereotipoRESUMEN
OBJECTIVE: To compare the effects on balance and walking of three models of stroke rehabilitation: early supported discharge with rehabilitation in a day unit or at home, and traditional uncoordinated treatment (control). DESIGN: Group comparison study within a randomised controlled trial. SETTING: Hospital stroke unit and primary healthcare. INCLUSION CRITERIA: a score of 2-26 on National Institutes of Health Stroke Scale, assessed with Postural Assessment Scale for Stroke (PASS), and discharge directly home from the hospital stroke unit. INTERVENTIONS: Two intervention groups were given early supported discharge with treatment in either a day unit or the patient's own home. The controls were offered traditional, uncoordinated treatment. OUTCOME MEASURES: Primary: PASS. Secondary: Trunk Impairment Scale-modified Norwegian version; timed Up-and-Go; 5â m timed walk; self-reports on problems with walking, balance, ADL, physical activity, pain and tiredness. The patients were tested before randomisation and 3â months after inclusion. RESULTS: From a total of 306 randomised patients, 167 were tested with PASS at baseline and discharged directly home. 105 were retested at 3â months: mean age 69â years, 63 men, 27 patients in day unit rehabilitation, 43 in home rehabilitation and 35 in a control group. There were no group differences, either at baseline for demographic and test data or for length of stroke unit stay. At 3â months, there was no group difference in change on PASS (p>0.05). Some secondary measures tended to show better outcome for the intervention groups, that is, trunk control, median (95% CI): day unit, 2 (0.28 to 2.31); home rehabilitation, 4 (1.80 to 3.78); control, 1 (0.56 to 2.53), p=0.044; and for self-report on walking, p=0.021 and ADL, p=0.016. CONCLUSIONS: There was no difference in change between the groups for postural balance, but the secondary outcomes indicated that improvement of trunk control and walking was better in the intervention groups than in the control group. TRIAL REGISTRATION: This study is part of the Early Supported Discharge after Stroke in Bergen, ClinicalTrials.gov (NCT00771771).
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Rehabilitación Neurológica/métodos , Equilibrio Postural , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/fisiopatología , Caminata , Adulto , Anciano , Anciano de 80 o más Años , Centros de Día , Femenino , Servicios de Atención de Salud a Domicilio , Humanos , Masculino , Persona de Mediana Edad , Modelos Teóricos , Alta del Paciente , Método Simple CiegoRESUMEN
BACKGROUND: Evaluation of treatment effects on walking requires appropriate and responsive outcome measures. OBJECTIVES: To determine responsiveness of 5 walking measures and provide reference values for clinically meaningful improvements, according to disability level, in persons with multiple sclerosis (pwMS). METHODS: Walking tests were measured pre- and postrehabilitation in 290 pwMS from 17 European centers. Combined anchor- and distribution-based methods determined responsiveness of objective short and long walking capacity tests (Timed 25-Foot Walk [T25FW] and 2- and 6-Minute Walk Tests [2MWT and 6MWT] and of the patient-reported Multiple Sclerosis Walking Scale-12 [MSWS-12]). A global rating of change scale, from patients' and therapists' perspective, was used as external criteria to determine the area under the receiver operating characteristic curve (AUC), minimally important change (MIC), and smallest real change (SRC). Patients were stratified into disability subgroups (Expanded Disability Status Scale score ≤4 [n = 98], >4 [n = 186]). RESULTS: MSWS-12, 2MWT, and 6MWT were more responsive (AUC 0.64-0.73) than T25FW (0.50-0.63), especially in moderate to severely disabled pwMS. Clinically meaningful changes (MICs) from patient and therapist perspective were -10.4 and -11.4 for MSWS-12 (P < .01), 9.6 m and 6.8 m for 2MWT (P < .05), and 21.6 m (P < .05) and 9.1 m (P = .3) for 6MWT. In subgroups, MIC was significant from patient perspective for 2MWT (10.8 m) and from therapist perspective for MSWS-12 (-10.7) in mildly disabled pwMS. In moderate to severely disabled pwMS, MIC was significant for MSWS-12 (-14.1 and -11.9). CONCLUSIONS: Long walking tests and patient-reported MSWS-12 were more appropriate than short walking tests in detecting clinically meaningful improvement after physical rehabilitation, particularly the MSWS-12 for moderate to severely disabled pwMS.