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1.
Disabil Rehabil ; 46(8): 1580-1592, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37092355

RESUMO

Purpose: Falls are a major issue for people with neurological conditions, and the evaluation of falls prevention interventions is of high priority. To date, the views of patient groups regarding outcomes of importance have been largely overlooked. The purpose of this study was to explore outcomes of interest among people with Multiple Sclerosis (MS), Parkinson's disease (PD) and stroke upon completion of falls prevention interventions to inform the development of a core outcome set (COS).Materials and methods: Five online focus groups and one semi-structured interview were conducted among people with PD (n = 10), MS (n = 7), and post-stroke (n = 3), one of whom also had PD. Transcripts were analysed using reflexive thematic analysis.Results: Four themes were developed; (1) Fall events are not homogeneous, (2) Exercise-based programmes are beneficial but falls services are not meeting user needs, (3) Programme success beyond the reduction in falls, and (4) Acquisition of skills to self-manage falls beyond the life of the programme.Conclusions: This study presents new perspectives across patient groups regarding important outcomes upon completion of falls prevention interventions. Taken together with the findings of a literature review, this data will inform the development of a COS.Implications for rehabilitationPeople with multiple sclerosis, Parkinson's disease and stroke consider the success of a falls prevention intervention to be dependent on improvements across a wide range of outcomes.The design and implementation of falls prevention interventions should align with patient preferences.Clinicians and researchers should consider the use of multidomain interventions to facilitate improvements in the desired outcomes of patients.


Assuntos
Esclerose Múltipla , Doença de Parkinson , Acidente Vascular Cerebral , Humanos , Exercício Físico , Terapia por Exercício , Esclerose Múltipla/complicações , Avaliação de Resultados em Cuidados de Saúde , Doença de Parkinson/complicações , Acidente Vascular Cerebral/prevenção & controle , Pesquisa Qualitativa
2.
PLoS One ; 18(11): e0294193, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37956176

RESUMO

INTRODUCTION: Clinical trials evaluating the effectiveness of falls prevention interventions for people with Multiple Sclerosis (MS), Parkinson's Disease (PD) and stroke measure heterogeneous outcomes, often omitting those meaningful to patients. A core outcome set (COS) is a standardised set of outcomes that should be assessed in all trials within a research area. The aim of this study was to develop a COS for evaluating mixed-diagnosis falls prevention interventions for people with MS, PD and stroke in non-acute and community settings, with input from relevant stakeholder groups. METHODS: Previously published research undertaken by the team, including a qualitative study with 20 patients and a review of the literature, were used to derive a longlist of potential outcomes. Outcomes were prioritised for inclusion in the COS using a three-round online Delphi survey. A multi-stakeholder, consensus meeting was conducted to agree upon the final COS and to provide a recommendation for a single outcome measure for each outcome in the COS. RESULTS: Forty-eight participants were recruited across four stakeholder groups (researchers, patients, clinicians, and service-planners/policymakers). A total of 42 participants (87.5%) completed all three rounds of the surveys. Sixty-two outcomes were considered for inclusion in the COS throughout the Delphi process. A total of 15 participants attended the consensus meeting where they agreed upon the final COS and accompanying measurement instruments: fall incidence, injurious fall incidence, quality of life, falls self-efficacy, fear of falling, activity curtailment due to fear of falling, and cost-effectiveness. Attendees at the consensus meeting recommended that the proposed mechanism of impact of an intervention is considered when selecting additional outcomes outside of those in the COS to assess. CONCLUSIONS: This study identified a COS for evaluating the effectiveness of mixed-diagnosis falls prevention interventions for people with MS, PD and stroke. It is recommended that this COS and accompanying measurement instruments be used in all future trials in this research area so that findings can be combined and compared.


Assuntos
Esclerose Múltipla , Doença de Parkinson , Acidente Vascular Cerebral , Humanos , Doença de Parkinson/diagnóstico , Esclerose Múltipla/complicações , Esclerose Múltipla/diagnóstico , Qualidade de Vida , Projetos de Pesquisa , Medo , Avaliação de Resultados em Cuidados de Saúde , Técnica Delphi , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/prevenção & controle , Resultado do Tratamento
4.
Mult Scler ; 29(13): 1595-1603, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37880951

RESUMO

We know very little about exercise adherence, compliance and sustainability in multiple sclerosis (MS), yet adherence is seemingly important for yielding immediate and sustained health benefits. This paper is focused on exercise adherence, compliance and sustainability in the context of informing research and practice involving MS. This focus is critical for clarifying terminology for future research and providing a roadmap guiding clinical research and practice. Our objective was accomplished through a narrative summary of the literature by a panel of experts on exercise adherence from the Moving Exercise Research in Multiple Sclerosis Forward (MoXFo) initiative and a concluding summary of the state of the literature and future research directions. The panel of experts identified three overall themes (Background and Importance; Understanding and Promoting Exercise Adherence, Compliance and Sustainability and Challenges to Exercise Adherence, Compliance and Sustainability) that represented a categorization of nine subthemes. These overall themes and subthemes formed the basis of our recommendations regarding future research broadly involving exercise adherence in MS. Overall, there is limited evidence on rates and determinants of exercise adherence and compliance in MS, and little is known about techniques and interventions for immediate and long-term exercise behaviour change.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Exercício Físico , Terapia por Exercício/métodos
5.
Mult Scler Relat Disord ; 71: 104520, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36724646

RESUMO

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.


Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Pandemias , Estudos Transversais , Modalidades de Fisioterapia
6.
Rural Remote Health ; 23(1): 8142, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36802717

RESUMO

Introduction (including aim): There is a lack of community-based programmes for older adults in Ireland. Such activities are vital to enable older people to (re)connect after COVID-19 measures, which had a detrimental effect on physical function, mental health and socialisation. The aims of the preliminary phases of the Music and Movement for Health study were to refine stakeholder informed eligibility criteria, recruitment pathways and obtain preliminary measures for feasibility of the study design and programme, which incorporates research evidence, practice expertise and participant involvement. METHODS: Two Transparent Expert Consultations (TECs) (EHSREC No: 2021_09_12_EHS), and Patient and Public Involvement (PPI) meetings were conducted to refine eligibility criteria and recruitment pathways. Participants from three geographical regions in the mid-west of Ireland will be recruited and randomised by cluster to participate in either a 12-week Music and Movement for Health programme or control. We will assess the feasibility and success of these recruitment strategies by reporting recruitment rates, retention rates and participation in the programme. RESULTS: Both the TECs and PPIs provided stakeholder-informed specification on inclusion/ exclusion criteria and recruitment pathways. This feedback was vital in strengthening our community-based approach as well as effecting change at the local level. The success of these strategies from phase 1 (March-June) are pending. DISCUSSION: Through engaging with relevant stakeholders, this research aims to strengthen community systems by embedding feasible, enjoyable, sustainable and cost-effective programmes for older adults to support community connection and enhance health and wellbeing. This will, in turn, reduce demands on the healthcare system.Note: We would like to thank and acknowledge those who participated in the PPIs for their time and invaluable feedback.


Assuntos
COVID-19 , Música , Humanos , Idoso , Estudos de Viabilidade , Promoção da Saúde , Saúde Mental
7.
J Neurol Phys Ther ; 47(2): 112-121, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36753458

RESUMO

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 ).


Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Pandemias , Qualidade de Vida , COVID-19/prevenção & controle , Exercício Físico
8.
Physiother Theory Pract ; 39(5): 954-962, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-35094662

RESUMO

BACKGROUND: Understanding the experiences of people with MS taking part in physical activity interventions is critical to inform future interventions. AIM: The aim was to gain insight into the experiences of people with MS taking part in a behavior change group physical activity intervention with a novel social cognitive theory component. METHODS: A qualitative semi-structured interview format was utilized. Questions focussed on expectations, views and beliefs at being involved in the study, beliefs on physical activity, and subjective evaluation of the trial content and delivery. Seventeen people were interviewed and data were analyzed using thematic analysis. RESULTS: Three themes were generated: psychological and social factors, intervention processes, and MS identity. The acceptance of MS as an identity acted as an initial barrier to exercise, with a more positive, exercise-enabling identity post-intervention. Psychological factors such as self-efficacy and anxiety, as well as social factors such as social support, were found to play an important role in how participants experienced the program. Similarly, intervention processes included support for group-based activities and structure of exercise classes, and were also inter-linked to the other themes. CONCLUSION: It appears that group-based exercise interventions are acceptable and feasible for people with MS. The qualitative findings support previously reported quantitative findings that the Step it Up intervention is effective at promoting physical activity and improving psychological outcomes.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Exercício Físico , Apoio Social , Terapia por Exercício , Cognição
9.
Mult Scler Relat Disord ; 69: 104419, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36413916

RESUMO

BACKGROUND: People with MS (PwMS) can experience a number of diverse needs which may be met by community-based services such as those delivered by MS Ireland (MSI), where Community Workers (CWs) provide support to PwMS on an individualised basis. However, while such support may be critical in helping PwMS adapt and cope with the challenges of living with MS, there has been little evaluation of the outcomes and impacts of this service to date. This study aimed to explore the perceived effectiveness and impacts of community work from the perspectives of both PwMS and CWs. METHODS: Using stakeholder engagement and public and patient involvement (PPI), two surveys were developed for (1) CWs, and (2) services users of MSI. A series of open and closed questions centred on the effectiveness of community work in meeting twelve distinct categories of needs taken from an adapted framework of rehabilitation and healthcare needs of PwMS. Both CWs and service users rated the extent to which these various needs were met through community work, as well as describing the mechanisms by which needs were met, and the challenges faced in meeting these needs. Separately, both groups described the perceived impacts of community work using open-text responses. RESULTS: Fifteen CWs and 367 PwMS, 269 (73%) of whom knew their CW, participated. Both groups rated community work positively in meeting the needs for information, emotional/psychological support and coordination of care, with lower perceived capacity for community work to meet needs for employment accommodations, caregiver support and homecare. Mann Whitney U tests did not find any significant difference between groups in the perceived capacity of community work to meet the various needs examined (p>.05). Core mechanisms by which CWs meet needs are by signposting to relevant services, listening, and facilitating peer support. Difficulty accessing external services was the primary challenge identified in meeting needs. Positive impacts of community work included the role that CWs play in fostering confidence and acceptance of MS, and in helping service users overcome the challenges of MS. CONCLUSION: Results suggest how CWs can help meet the needs of PwMS, while also highlighting the numerous positive impacts that community work has for this group. While it is clear that a number of unmet needs may remain due to a lack of access to other external services, this study shows how community-based services may play an important role in helping PwMS adapt to living with MS.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Irlanda , Inquéritos e Questionários , Emprego
10.
Pilot Feasibility Stud ; 8(1): 161, 2022 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-35908067

RESUMO

BACKGROUND: Neurogenic lower urinary tract dysfunction is an abnormality in the presence of underlying neurologic disease. A recent systematic review and meta-analysis demonstrated that storage phase symptoms are the predominant symptoms among people with multiple sclerosis (PwMS). Transcutaneous tibial nerve stimulation (TTNS) is a non-invasive treatment for bladder storage symptoms; however, the potential efficacy of stimulation among PwMS is based on a small number of studies with the absence of high-quality evidence. The aim of this study was to evaluate the feasibility, acceptability, and safety of TTNS in PwMS using an affordable transcutaneous electrical nerve stimulation (TENS) unit. METHODS: A total of 23 participants with MS enrolled in the study. The primary outcomes included recruitment/retention rate, completion of the outcomes and the intervention, adherence to the protocol, adverse events, and acceptability of the intervention. The primary outcomes were assessed using diaries and a satisfaction questionnaire. The secondary outcomes included changes in urinary symptoms and quality of life assessed using a set of validated outcome measures including a 3-day bladder diary, PPIUS, ICIQ-OAB, and KHQ at baseline and post-intervention. RESULTS: Twenty participants completed the study. Three participants (13.04%) withdrew. All 20 participants completed the 6-week intervention and all the outcome measures (100%), with no reported adverse events. Participants were satisfied and found the unit acceptable. Three-day bladder diary showed changes in urinary frequency from a daily median of 10 times to 8 times and daily median urgency changed from 6 times at baseline to 2 times post-intervention. PPIUS showed changes in daily median sever urgency from 3 points (IQR=4) to 1 point (IQR=1) post-intervention. ICIQ-OAB total scores changed from 8 points (IQR=2.25) to 4 points (IQR=2.5) post-intervention. Median and mean scores of KHQ showed a clinical meaningful change of QoL in part-two and part-three of the questionnaire. CONCLUSIONS: TTNS is feasible, safe, and acceptable for PwMS. Changes of urinary symptoms scores and QoL post-intervention suggested improvements. Future implications need to consider the treatment protocol including frequency of treatment sessions, duration of treatment, and the electrical stimulation parameters as well as the outcome measures followed in the current study for the implementation of the future pilot RCT. TRIAL REGISTRATION: ClinicalTrials.gov NCT04528784 . Registered on 27 August 2020. https://register. CLINICALTRIALS: gov/prs/app/action/LoginUser?ts=1&cx=-jg9qo4 .

11.
Arch Phys Med Rehabil ; 103(10): 2009-2015, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35760106

RESUMO

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.


Assuntos
COVID-19 , Esclerose Múltipla , Exercício Físico , Humanos , Pandemias , Inquéritos e Questionários , Tecnologia
12.
Mult Scler Relat Disord ; 62: 103799, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35428030

RESUMO

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.


Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Esclerose Múltipla/reabilitação , Esclerose Múltipla/terapia , Pandemias , Modalidades de Fisioterapia , Inquéritos e Questionários
13.
Disabil Rehabil ; 44(6): 856-864, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-32628889

RESUMO

PURPOSE: To identify the definitions of a fall, faller classifications and outcomes used in prospectively-recorded falls research among people with Multiple Sclerosis (MS). METHODS: A systematic review of peer-reviewed journal articles was conducted using electronic databases. Relevant data were extracted by one reviewer and verified by a second independent reviewer. RESULTS: Twenty-six papers met the inclusion criteria. A relative degree of heterogeneity existed amongst studies for the outcomes of interest to this review. Thirteen different fall definitions were identified. Fourteen different falls outcomes were used across the included studies, with six of these reported by only one study each. Data regarding injurious falls were presented by only eight papers. The majority (n = 17) of papers classified individuals as a faller if they fell at least once. CONCLUSIONS: This review highlights the large variation in fall definitions, faller classifications and outcomes used in this research field. This hinders cross-comparison and pooling of data, thereby preventing researchers and clinicians from drawing conclusive findings from existing literature. The creation of an international standard for the definition of a fall, faller classification and falls outcomes would allow for transparent and coordinated falls research for people with MS, facilitating progression in this research field.Implications for rehabilitationFalls are a common occurrence among people with Multiple Sclerosis (MS) resulting in numerous negative consequences.There is large heterogeneity in the definitions, methods and outcomes used in falls research for people with MS.This lack of standardisation prevents the accurate cross-comparison and pooling of data, impeding the identification of falls risk factors and effective falls prevention interventions for people with MS.Consequently, clinicians should interpret the outcomes of falls research for people with MS with caution, particularly when comparing studies regarding falls risk assessments and falls prevention interventions for use in clinical practice.


Assuntos
Esclerose Múltipla , Humanos , Medição de Risco , Fatores de Risco
14.
Disabil Rehabil ; 44(15): 3805-3815, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-33617371

RESUMO

PURPOSE: Urinary symptoms are highly prevalent among people with MS. This study aimed to explore the experiences of people with MS and HCPs in managing urinary symptoms and explore their views on using TTNS to treat urinary symptoms. MATERIALS AND METHODS: Audio-recorded semi-structured, interviews were employed with people with MS and HCPs. All transcribed interviews were exported to NVivo software (Version 12) and analyzed using a reflexive approach to thematic analysis. RESULTS: Four main themes were identified; The wide-ranging negative impacts of urinary symptoms ("It's limited everything else"), Gaps in urinary services ("Is there somebody like that, sort of specialized in that area?"), Management strategies ("I don't go too far from the toilet in case I need to use one"), and optimism about TTNS ("Are you giving Me Hope?"). CONCLUSION: Urinary symptoms are common and very troublesome for people with MS. Despite their prevalence, many people with MS continue to suffer in silence. People with MS require skilled multidisciplinary services guided by clinical care pathways to improve service provision and to address urinary symptoms. HCP's and people with MS are open to the use of TTNS for urinary symptoms and have clear preferences for location and duration of intervention delivery.Implications for rehabilitationUrinary symptoms are very common and troublesome for people with multiple sclerosis, yet many continue to suffer in silence.People with multiple sclerosis lack knowledge about treatment options for urinary symptoms.There is an on-going need for healthcare provider education on guidelines for screening and managing urinary symptoms in people with MS and the role of specialist urinary service providers.HCP's and people with MS are open to the use of TTNS for urinary symptoms.


Assuntos
Esclerose Múltipla , Atenção à Saúde , Pessoal de Saúde , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Pesquisa Qualitativa , Bexiga Urinária
15.
Disabil Rehabil ; 44(19): 5549-5556, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34151667

RESUMO

PURPOSE: An exploratory qualitative study investigating participants' experiences of a feasibility study of supervised and home-based Pilates. METHODS: All 10 females who participated in an eight-week supervised (n = 4) or home-based Pilates (n = 6) program were invited and agreed to be interviewed. Data were collected via semi-structured interviews and researcher observations of participant experiences. Data were analysed using codebook thematic analysis framework. RESULTS: Two domain summaries emerged: (1) the suitability of home-based Pilates in particular for this population. Participants indicated that supervised and home-based Pilates was a safe, intensity-appropriate, and implementable exercise method to improve mental health outcomes among persons with multiple sclerosis (PwMS), and (2) the benefits experienced by PwMS while participating in Pilates. Home-based Pilates reduced both exercise participation and accessibility barriers commonly experienced by PwMS. Furthermore, PwMS reported improvements in mental health outcomes following Pilates, in both exercise environments. CONCLUSIONS: PwMS reported experiencing improved mood following regular Pilates training and indicated that home-based in particular reduced barriers regularly experienced by this population. Results support Pilates as a feasible exercise modality providing potential mood improvements among PwMS. Future appropriately powered home-based randomised controlled trials to further explore the effects of Pilates training on mental health among PwMS with minimal-to-mild mobility disability are warranted.Implications for RehabilitationParticipants in this study described the mental health benefits experienced from engaging in Pilates, a non-traditional exercise modality.Home-based Pilates overcame participatory and accessibility barriers to exercise among people with multiple sclerosis (MS).Participants valued that Pilates was low intensity and did not exacerbate fatigue.Home-based Pilates is a feasible exercise method for people with MS with minimal-to-mild mobility disability.


Assuntos
Esclerose Múltipla , Exercício Físico , Terapia por Exercício/métodos , Fadiga , Estudos de Viabilidade , Feminino , Humanos , Esclerose Múltipla/psicologia
16.
BMC Neurol ; 21(1): 378, 2021 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-34587933

RESUMO

BACKGROUND: The implementation of condition-specific falls prevention interventions is proving challenging due to lack of critical mass and resources. Given the similarities in falls risk factors across stroke, Parkinson's Disease (PD) and Multiple Sclerosis (MS), the development of an intervention designed for groups comprising of people with these three neurological conditions may provide a pragmatic solution to these challenges. The aims of this umbrella review were to investigate the effectiveness of falls prevention interventions in MS, PD and stroke, and to identify the commonalities and differences between effective interventions for each condition to inform the development of an intervention for mixed neurological groups. METHODS: A systematic literature search was conducted using 15 electronic databases, grey literature searches and hand-screening of reference lists. Systematic reviews of studies investigating the effects of falls prevention interventions in MS, PD and stroke were included. Methodological quality of reviews was assessed using the A MeaSurement Tool to Assess Systematic Reviews 2. A matrix of evidence table was used to assess the degree of overlap. The Grading of Recommendations Assessments, Development and Evaluation framework was used to rate the quality of evidence. Findings were presented through narrative synthesis and a summary of evidence table. RESULTS: Eighteen reviews were included; three investigating effectiveness of falls prevention interventions in MS, 11 in PD, three in stroke, and one in both PD and stroke. Exercise-based interventions were the most commonly investigated for all three conditions, but differences were identified in the content and delivery of these interventions. Low to moderate quality evidence was found for the effectiveness of exercise-based interventions at reducing falls in PD. Best available evidence suggests that exercise is effective at reducing falls in stroke but no evidence of effect was identified in MS. CONCLUSIONS: The findings suggest that exercise-based interventions are effective at reducing falls in PD, however, the evidence for MS and stroke is less conclusive. A strong theoretical rationale remains for the use of exercise-based interventions to address modifiable physiological falls risk factors for people with MS, PD and stroke, supporting the feasibility of a mixed-diagnosis intervention. Given the high overlap and low methodological quality of primary studies, the focus should be on the development of high-quality trials investigating the effectiveness of falls prevention interventions, rather than the publication of further systematic reviews.


Assuntos
Acidentes por Quedas/prevenção & controle , Esclerose Múltipla , Doença de Parkinson , Acidente Vascular Cerebral , Exercício Físico , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/epidemiologia , Doença de Parkinson/complicações , Doença de Parkinson/epidemiologia , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/epidemiologia , Revisões Sistemáticas como Assunto
17.
Int J MS Care ; 23(3): 119-127, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34177384

RESUMO

BACKGROUND: Approximately 56% of people with multiple sclerosis (MS) will fall in any 3-month period, with the potential for physical, psychological, and social consequences. Fall-prevention research for people with MS is in its infancy, with a timely need to develop theory-based interventions that reflect the complexity of falls. The clear articulation of the development of any complex intervention is paramount to its future evaluation, usability, and effectiveness. Our aim was to describe how the development of Better Balance, a complex multicomponent fall-prevention intervention for people with MS, was guided by the Medical Research Council framework for the development of complex interventions. METHODS: Sources of information included existing literature, original research, clinician interviews, and views of people with MS. These sources were synthesized and refined through an iterative process of intervention development involving researchers, clinicians, and people with MS. RESULTS: The resulting intervention is outlined through a variety of key tasks supplementing the original Medical Research Council framework. Use of this framework resulted in a theoretically based and user-informed complex intervention designed to address the physiological, personal, and behavioral risk factors associated with falls in people with MS. CONCLUSIONS: The articulation of the systematic process used to develop Better Balance will inform the future evaluation and usability of the intervention.

18.
Mult Scler ; 27(14): 2267-2279, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33870785

RESUMO

BACKGROUND: Symptoms of anxiety, depression and fatigue are common comorbidities among persons with multiple sclerosis (PwMS). A previous pilot study supported Pilates as a feasible exercise modality that may improve these outcomes among PwMS. OBJECTIVE: To quantify the effects of 8 weeks of home-based Pilates on symptoms of anxiety, depression and fatigue among PwMS. METHODS: A total of 80 PwMS (69 female) were randomized to twice-weekly home-based Pilates guided by a DVD) or wait-list control. Validated questionnaires assessed anxiety, depressive and fatigue symptoms at baseline, weeks 2, 4, 6 and 8. Using intention to treat, repeated measures analysis of covariance (RM-ANCOVA) adjusted for baseline physical activity examined between-group differences across time. Hedges' d quantified the magnitude of differences in outcome change. Sensitivity analyses examined female-only samples. RESULTS: Group × time interactions were statistically significant for all outcomes (all p ⩽ 0.005). Pilates significantly reduced (all p ⩽ 0.03) depressive symptoms (Quick Inventory of Depressive Symptomatology, d = 0.70; Hospital Anxiety and Depression Scale-Depression, d = 0.74), anxiety (State-Trait Anxiety Inventory, d = 0.30; Hospital Anxiety and Depression Scale-Anxiety, d = 0.49), cognitive (d = 0.44), physical (d = 0.78), psychosocial (d = 0.56) and total fatigue (d = 0.76). Female-only results were materially the same. CONCLUSION: Home-based Pilates significantly improved anxiety, depressive and fatigue symptoms among PwMS with minimal-to-mild mobility disability, including moderate-to-large, clinically meaningful improvements in depressive and fatigue symptoms.Trial Registration: ClinicalTrials.gov (NCT04120207).


Assuntos
Esclerose Múltipla , Ansiedade/terapia , Depressão/terapia , Fadiga/etiologia , Fadiga/terapia , Feminino , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Projetos Piloto
19.
PLoS One ; 16(3): e0245738, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33661934

RESUMO

BACKGROUND: To date services for children with Developmental Coordination Disorder (DCD) have not been informed by the perspective of children with DCD. This study aimed to synthesise the findings of discrete qualitative studies reporting the lived experiences views and preferences of children and young with DCD using a meta-ethnographic approach to develop new conceptual understandings. METHODS: A systematic search of ten databases; Academic Search Complete, AMED, CINAHL, ERIC, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science, was conducted between March and April 2019, and updated in early June 2020. Meta-ethnography, following the method described by Noblit and Hare was used to synthesise included studies. The Joanna Briggs Institute Checklist was used to appraise all included papers. PROSPERO registration number CRD42019129178. RESULTS: Fifteen studies met the inclusion criteria. Meta-ethnographic synthesis produced three themes; a) 'It's harder than it should be': Navigating daily activities b) Fitting in, and c) 'So what? I drop things': Strategies and supports to mitigate challenges. Children with DCD describe a mismatch between their abilities and performance norms for daily activities that led to a cascade of negative consequences including negative self-appraisal, bullying and exclusion. In the face of these difficulties children described creative and successful strategies they enacted and supports they accessed including; assistance from others (parents, friends and teachers), focusing on their strengths and talents, accepting and embracing their difference, adopting a "just do it" attitude, setting personal goals, self-exclusion from some social activities, using humour or sarcasm, viewing performance expectations as a social construct, and enjoying friendships as a forum for fun, acceptance and protection against exclusion. CONCLUSION: Service provision for children and young people with DCD should address the social and attitudinal environments, focus on friendship and social inclusion and address stigma-based bullying particularly within the school environment. Furthermore, practitioners should identify and foster children's own strategies for navigating daily life activities with DCD. The identified themes resonate with contemporary disability theory and the International Classification of Functioning. The social and attitudinal environmental context of children and young people with DCD profoundly influences their experiences. Future intervention development and service provision for children and young people with DCD should consider opportunities to address social and attitudinal environmental factors.


Assuntos
Apraxias , Transtornos das Habilidades Motoras , Adolescente , Apraxias/psicologia , Criança , Humanos , Transtornos das Habilidades Motoras/psicologia
20.
HRB Open Res ; 4: 123, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-35633846

RESUMO

Background: Given the high incidence of falls and their associated negative effects, the development of effective falls prevention interventions for people with Multiple Sclerosis (MS), Parkinson's Disease (PD) and stroke is a priority. Currently the implementation of condition-specific falls prevention interventions is challenging in the community due to lack of participants and resources. Given the similarities in falls risk factors across stroke, PD and MS, the design of mixed-diagnosis interventions for groups comprising of people with these three neurological conditions may solve these implementation challenges. Having a core outcome set (COS) for evaluating these interventions would enable the comparison and combination of data, thereby facilitating progress in this research area. Therefore, the aim of this research study is to develop a COS for evaluating mixed-diagnosis falls prevention interventions for people with MS, PD and stroke. Methods: This will be a mixed-methods, international, multi-perspective Delphi consensus study with five stages. Stage one will involve the identification of potential outcomes through a systematic literature search, patient focus groups, and consultation with our Public and Patient Involvement (PPI) panel. The second stage will be the development of the Delphi survey using the outcomes elicited from stage one. Stage three will be the prioritisation of outcomes using a two-round online Delphi survey involving patients, clinicians, researchers and policy-makers/service-planners. The fourth stage will be to identify and recommend outcome measures and definitions. The final stage will be a consensus meeting with representatives from each stakeholder group to agree upon the final COS. Discussion: Adoption of this COS in future trials investigating the effectiveness of mixed-diagnosis falls prevention interventions for people with MS, PD and stroke will facilitate the comparison and combination of research findings. This should translate into improved decision-making by service-planners/policy-makers and clinicians regarding the implementation of evidence-based falls prevention interventions into practice.

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