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2.
Mult Scler Relat Disord ; 87: 105691, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38781884

ABSTRACT

BACKGROUND: Persons with multiple sclerosis (MS) need regular access to medical services for optimal health outcomes. During the COVID-19 crisis, evidence indicated some detrimental health changes in persons with MS. Maintaining access to healthcare providers and healthcare information may minimise detrimental health changes during times of crisis. In Australia, there is limited evidence of consultation with people who have chronic health conditions or disabilities regarding government decisions to restrict healthcare access and in the provision of health guidance during the COVID-19 crisis. Yet, there are good examples of government consultation with other minority populations in Australia, leading to beneficial outcomes. OBJECTIVE: To identify MS community members' (persons with MS carers, advocates, healthcare providers) concerns about the health and healthcare access of persons with MS, during the second year of the COVID-19 pandemic and to collaborate with consumers in the MS community to co-create strategies to improve future access and health information provision at times of crisis. METHOD: We undertook a consumer-co-created mixed-method study in the second year of the COVID-19 pandemic to identify healthcare access needs for MS. We presented results to our stakeholder group to identify support needs during crises. Persons with MS and care providers in the MS community completed an online survey and online interviews, and the stakeholder group participated in a stakeholder workshop. RESULTS: Forty-four people participated in surveys, 33 completed interviews, and seven stakeholders participated in the stakeholder workshops. Three themes were identified from the surveys and interviews: health concerns, accessing healthcare services and communication sources. Healthcare providers (76.9 % of persons with MS and 77.8 % of care providers) and websites specific to the pandemic (76.9 % of persons with MS and 83.3 % of care providers) were identified by most survey respondents as preferred information sources during the COVID-19 crisis. Consultation with stakeholders resulted in the co-creation of strategies directed at communication, health, and lifestyle, as well as policies and protocols to address the needs of the MS community during crises. CONCLUSION: We listened to persons with MS and care providers to identify strategies to support health-communication, -access, and -lifestyle during crises. Consumer-created strategies are directed at national and local health advocacy organisations and governments. They are relevant for the coordinated healthcare planning of persons with chronic health conditions and disabilities during crises, such as those experienced by persons with MS.


Subject(s)
COVID-19 , Health Services Accessibility , Multiple Sclerosis , Humans , COVID-19/epidemiology , Multiple Sclerosis/therapy , Multiple Sclerosis/epidemiology , Adult , Male , Australia/epidemiology , Female , Middle Aged , Aged
3.
Mult Scler Relat Disord ; 87: 105689, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38820698

ABSTRACT

BACKGROUND: The growing importance of telehealth in multiple sclerosis (MS) necessitates an understanding of current practices and training needs of health professionals. We aimed to evaluate the knowledge, preparedness, and training preferences of Australian allied health professionals (AHPs) in telehealth exercise therapy and exercise behavioural change for MS patients to inform the development of educational training. METHODS: An online survey was completed by 58 Australian AHPs, including 34 physiotherapists, 14 exercise physiologists, and 10 occupational therapists, focusing on their current practices, preparedness, and training preferences in telehealth exercise and behavioural change for MS. The survey included multiple-choice, Likert scale, and free-text response questions. Data were analysed using binary and multinomial logistic regressions. RESULTS: Not all AHPs were aware of MS exercise guidelines (67% awareness), with exercise physiologists showing the highest familiarity. There was a significant understanding of the difference between physical activity and exercise, though definitions often lacked clarity. Most AHPs (91%) employed behavioural change strategies in their practice, especially goal-setting (95%), identifying facilitators (67%), and reinforcing progress (66%). While most (72%) felt prepared in promoting exercise to MS clients, there were differences in confidence levels concerning the prescription, modification, and teaching of telehealth exercise programs, with occupational therapists have significant less confidence in those domains compared to other AHPs. Most AHPs expressed interest in additional training, with a preference for online workshops focusing on exercise prescription for MS, behaviour change, and telehealth delivery methods. CONCLUSION: In our Australian AHP sample we identified that a quarter to a third of AHPs in MS care may not be confident or prepared to promote telehealth exercise and behavioural change to people with MS. Moreover, the findings highlight some disparity in knowledge and confidence levels amongst different AHPs concerning exercise therapy for MS, indicating the need for tailored multidisciplinary training programs. Such programs should address profession-specific educational gaps and training preferences, ensuring effective and safe telehealth exercise prescription in MS care.


Subject(s)
Allied Health Personnel , Exercise Therapy , Health Knowledge, Attitudes, Practice , Multiple Sclerosis , Telemedicine , Humans , Multiple Sclerosis/therapy , Multiple Sclerosis/rehabilitation , Exercise Therapy/methods , Australia , Male , Female , Adult , Middle Aged , Attitude of Health Personnel , Physical Therapists/education
4.
Mult Scler ; 30(4-5): 605-611, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38333909

ABSTRACT

We documented reporting and rates of drop-out, adherence, and compliance from 40 randomized controlled trials (RCTs) included in our meta-analysis on safety of exercise training (ET) in MS. We adopted definitions and metrics of adherence and compliance provided by the MoXFo adherence group. Drop-out was reported in 100% of the RCTs and approximated 10% for intervention and control conditions. Adherence and compliance were reported in approximately 50% and 10% of the RCTs, respectively, and approximated 80% and 70%, respectively. Standardized metrics for reporting adherence and compliance are important in future RCTs for understanding the impact on outcomes and translation of research evidence into practice.


Subject(s)
Exercise , Multiple Sclerosis , Humans , Randomized Controlled Trials as Topic , Exercise Therapy , Multiple Sclerosis/therapy
5.
Chiropr Man Therap ; 31(1): 48, 2023 11 27.
Article in English | MEDLINE | ID: mdl-38012657

ABSTRACT

BACKGROUND: Shoulder pain is common among the adult population, but it appears to reduce in prevalence around retirement age. Associations between shoulder pain and work-place exposures, physical activity, or mental health status are unclear and may change with age. This study aimed to determine the prevalence of self-reported shoulder pain in Australian adults across two generations and test the association with occupational factors, physical activity, and mental health. METHODS: In this cross-sectional study we used data from a longitudinal Australian pregnancy cohort (the Raine Study). We analysed data from the children (Gen2) at the 22-year follow-up (N = 1128) and parents (Gen1) at the 26-year follow-up (N = 1098). Data were collected on self-reported shoulder pain, occupational factors (employment status and work description), physical activity, and mental health at the respective follow-ups. Prevalence rates were provided as percentages with 95% confidence intervals. Univariate analysis for group comparisons included chi squared for categorical comparisons. The association of predictor variables and shoulder pain was assessed using logistical regression. RESULTS: In Gen1 31.4% of adults aged 40-80 reported the presence of shoulder pain in the last month, with no significant difference between females and males. Gen1 participants younger than 65 reported more shoulder pain (OR[95%CI] = 1.80 [1.04-3.09]). Gen2 females (14.7%) reported shoulder pain in either shoulder more frequently than males (7.7%) and bilateral shoulder pain (8.0%) more frequently than males (1.9%). Gen1 had increased odds of reporting shoulder pain if their work was "physical or heavy manual" compared to "sedentary" (OR [95% CI] = 1.659 [1.185-2.323]) and when categorised with depression (OR [95% CI] = 1.940 [1.386-2.715]) or anxiety (OR [95% CI] = 1.977 [1.368-2.857]). Gen2 participants with depression (OR [95% CI] = 2.356 [1.620-3.427]) or anxiety (OR [95% CI] = 2.003 [1.359-2.952]) reported more shoulder pain. CONCLUSION: Overall, shoulder pain was more prevalent in young females than males and was more prevalent in those under the age of 65. Cross-sectional associations were established between some occupational factors in older adults and depression in all adults, and shoulder pain.


Subject(s)
Mental Health , Shoulder Pain , Male , Child , Female , Pregnancy , Humans , Aged , Shoulder Pain/epidemiology , Cross-Sectional Studies , Prevalence , Australia/epidemiology , Exercise
7.
Mult Scler ; 29(13): 1595-1603, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37880951

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Exercise , Exercise Therapy/methods
8.
Mult Scler ; 29(13): 1551-1560, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37880961

ABSTRACT

BACKGROUND: Multiple sclerosis (MS) exercise terminology lacks consistency across disciplines, hindering research synthesis. OBJECTIVE: The 'Moving exercise research in MS forward initiative' (MoXFo) aims to establish agreed definitions for key MS exercise terms. METHODS: The Lexicon development methodology was employed. A three-step process identified key exercise terminology for people with multiple sclerosis (pwMS): (1) consensus and systematic review, (2) Delphi round 1 and consideration of existing definitions and (3) Delphi round 2 for consensus among MoXFo steering group and exercise experts. Final definitions and style harmonisation were agreed upon. RESULTS: The two-stage Delphi process resulted in the selection and scoring of 30 terminology definitions. The agreement was 100% for resistance exercise, balance and physical activity. Most terms had agreement >75%, but 'posture' (60%) and 'exercise' (65%) had a lower agreement. CONCLUSION: This study identified key terms and obtained agreement on definitions for 30 terms. The variability in agreement for some terms supports the need for clearly referencing or defining terminology within publications to enable clear communication across disciplines and to support precise synthesis and accurate interpretation of research.


Subject(s)
Multiple Sclerosis , Humans , Consensus , Vocabulary , Delphi Technique , Exercise
9.
Mult Scler ; 29(13): 1604-1631, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37880997

ABSTRACT

BACKGROUND: A review of the safety profile of exercise training in multiple sclerosis (MS) has not been conducted since 2013. OBJECTIVE: We undertook a systematic review and meta-analysis of randomised controlled trials (RCTs) of exercise training published since 2013 and quantified estimated population risks of clinical relapse, adverse events (AE) and serious adverse event (SAE). METHODS: Articles reporting safety outcomes from comparisons of exercise training with non-exercise among persons with MS were identified. The risk of bias was established from study's internal validity assessed using Physiotherapy Evidence Database (PEDro). Rates and estimated mean population relative risks (RRs; 95% confidence interval (CI)) of safety outcomes were calculated, and random-effects meta-analysis estimated the mean RR. RESULTS: Forty-six interventions from 40 RCTs (N = 1780) yielded 46, 40 and 39 effects for relapse, AE, adverse effects and SAE, respectively. The mean population RRs ((95% CI), p-value) for relapse, AE and SAE were 0.95 ((0.61, 1.48), p = 0.82), 1.40 ((0.90, 2.19), p = 0.14) and 1.05 ((0.62, 1.80), p = 0.85), respectively. No significant heterogeneity is observed for any outcome. CONCLUSION: In studies that reported safety outcomes, there was no higher risk of relapse, AE, adverse effects or SAE for exercise training than the comparator. Exercise training may be promoted as safe and beneficial to persons with MS.


Subject(s)
Exercise , Multiple Sclerosis , Humans , Exercise Therapy/adverse effects , Chronic Disease , Multiple Sclerosis/therapy , Recurrence
10.
PLoS One ; 18(4): e0283394, 2023.
Article in English | MEDLINE | ID: mdl-37040372

ABSTRACT

INTRODUCTION: Inclusion body myositis (IBM) is the most commonly acquired skeletal muscle disease of older adults involving both autoimmune attack and muscle degeneration. As exercise training can improve outcomes in IBM, this study assessed whether a combination of testosterone supplementation and exercise training would improve muscle strength, physical function and quality of life in men affected by IBM, more than exercise alone. METHODS: This pilot study was a single site randomised, double-blind, placebo-controlled, crossover study. Testosterone (exercise and testosterone cream) and placebo (exercise and placebo cream) were each delivered for 12 weeks, with a two-week wash-out between the two periods. The primary outcome measure was improvement in quadriceps isokinetic muscle strength. Secondary outcomes included assessment of isokinetic peak flexion force, walk capacity and patient reported outcomes, and other tests, comparing results between the placebo and testosterone arms. A 12-month Open Label Extension (OLE) was offered using the same outcome measures collected at 6 and 12-months. RESULTS: 14 men completed the trial. There were no significant improvements in quadriceps extension strength or lean body mass, nor any of the secondary outcomes. Improvement in the RAND Short Form 36 patient reported outcome questionnaire 'emotional wellbeing' sub-category was reported during the testosterone arm compared to the placebo arm (mean difference [95% CI]: 6.0 points, [95% CI 1.7,10.3]). The OLE demonstrated relative disease stability over the 12-month period but with a higher number of testosterone-related adverse events. CONCLUSIONS: Adding testosterone supplementation to exercise training did not significantly improve muscle strength or physical function over a 12-week intervention period, compared to exercise alone. However, the combination improved emotional well-being over this period, and relative stabilisation of disease was found during the 12-month OLE. A longer duration trial involving a larger group of participants is warranted.


Subject(s)
Myositis, Inclusion Body , Testosterone , Male , Humans , Aged , Cross-Over Studies , Quality of Life , Pilot Projects , Exercise , Muscle Strength/physiology
11.
Mult Scler Relat Disord ; 71: 104520, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36724646

ABSTRACT

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.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Pandemics , Cross-Sectional Studies , Physical Therapy Modalities
12.
J Neurol Phys Ther ; 47(2): 112-121, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36753458

ABSTRACT

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 ).


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Pandemics , Quality of Life , COVID-19/prevention & control , Exercise
13.
Mult Scler Relat Disord ; 71: 104531, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36709575

ABSTRACT

BACKGROUND: In 2019 and 2020, over 17 million hectares of Australia burned, and half of the Australian population was affected by toxic bushfire smoke. Then in 2020, restrictions designed to curtail the spread of COVID-19 resulted in significant changes to healthcare access. There is no Australian emergency management standard for persons with disabilities, including those with multiple sclerosis (MS). Persons with MS often require multidisciplinary and complex care, with continuity of treatment essential to prevent disease progression. OBJECTIVE: To identify limitations in access to healthcare from the perspective of persons with MS as well as MS care providers during recent crises and make recommendations for policy to improve MS healthcare access during a crisis. METHOD: In mid-2020, we undertook online surveys and interviews with persons with MS, their carers, healthcare professionals and staff of MS service providers (i.e., care providers). We used descriptive analysis for quantitative, and a general inductive approach for qualitative data. RESULTS: One-hundred and thirteen persons with MS and a total of 63 MS care providers, who were close carers, healthcare professionals and service providers provided survey responses. For participants with MS, limited access to general practitioners and medical tests were of the most significant concern during the bushfires and the pandemic. In contrast, during the pandemic accessing physiotherapy was another top concern. Twenty-nine people participated in in-depth interviews, revealing that reduced healthcare access during the bushfire and the pandemic caused concern. The use of telehealth received both positive and negative reviews. All participants indicated a need for preparation and planning for healthcare access before a crisis. Persons with MS recommended centralised information sources, prioritised access to healthcare and increased levels of MS nurses and other allied healthcare. Care providers recommended centralised information sources, more nursing and mental health care access, and increased opportunities for multidisciplinary telehealth delivery. CONCLUSIONS: We recommend the involvement of the MS community in creating and designing disaster preparation plans, which should cater to a range of disaster types, to improve disaster preparedness in a community that is vulnerable to increasingly common community crises.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Australia , Health Personnel , Health Services Accessibility
14.
Health Expect ; 26(2): 785-794, 2023 04.
Article in English | MEDLINE | ID: mdl-36639883

ABSTRACT

OBJECTIVE: The COVID-19 pandemic continues to impact communities around the world. In this study, we explored the COVID-19 experiences of persons with multiple sclerosis (MS) and carers. METHODS: Using a qualitative approach, interviews were undertaken with 27 participants residing in Australia (10 persons with MS, 10 carers and 7 MS service providers). Demographic and background data were also collected. Interviews were analysed using an inductive iterative thematic analysis. RESULTS: Across all groups, participants consistently recognized pandemic challenges and impacts for persons with MS and carers, especially due to disruption to routines and services. Emotional and mental health impacts were also highlighted, as anxiety, fear of contracting COVID-19 and stress, including relationship stress between persons with MS and carers and family members. Some persons with MS also mentioned physical health impacts, while for carers, the challenge of disruptions included increased demands and reduced resources. In addition to acknowledging challenges, persons with MS and carers also gave examples of resilience. This included coping and adapting by finding new routines and creating space through rest and breaks and through appreciating positives including the benefits of access to telehealth. CONCLUSION: Additional support is required for persons with MS and carers in navigating the impacts of COVID-19 as the pandemic progresses. In addition to addressing challenges and disruptions, such support should also acknowledge and support the resilience of people with MS and carers and enhance resilience through supporting strategies for coping and adaptation. PATIENT AND PUBLIC CONTRIBUTION: Service user stakeholders were consulted at the beginning and end of the study. They provided feedback on interview questions and participant engagement, as well as service user perspectives on the themes identified in the current study. Participants were provided with summaries of key themes identified and invited to provide comments.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Caregivers/psychology , Australia , Pandemics
15.
Disabil Rehabil ; 45(4): 630-643, 2023 Feb.
Article in English | MEDLINE | ID: mdl-35166613

ABSTRACT

PURPOSE: The Australian multiple sclerosis (MS) community experienced two recent major crises, widespread bushfires and the COVID 19 pandemic. We aimed to understand the needs of persons with MS during times of crisis. MATERIALS AND METHODS: A consumer-directed mixed-method study. We included an online survey, semi-structured interviews, and a workshop with persons with MS, carers, healthcare professionals, and disability advocates. Data were collected via: (1) 176 people completing online surveys to identify crisis concerns and communications, (2) 29 people completing online interviews on bushfire and pandemic impact, and (3) 13 people participating in a crises-priorities workshop. Descriptive data were calculated for survey response, and a general inductive analytical approach was taken with interview and workshop responses. RESULTS: The most significant concerns were bushfire smoke exposure and disease-modifying-medication and susceptibility to COVID-19 (66% and 63% mean concern score, respectively). Interviews indicated crises experiences from the bushfires, and the pandemic overlapped respective of changes in mood and symptom stability. For bushfires, a need for future preparations, and for the pandemic, the benefits of social restrictions, disclosing personal health information and increased care burden were important. CONCLUSIONS: Multiple crises challenged the MS community but offered lessons for healthcare in future crises. Continued progress in centralised crisis information, with considered use of telehealth and rural healthcare support, is needed.Implications for rehabilitationThe MS community showed high concerns for the effect of toxic smoke from the 2019/2020 Australian bushfires and, separately, for the disease-modifying-medication and susceptibility to COVID-19.The MS community placed priority on a crisis management plan for individuals.Reduced social activity due to restrictions was beneficial for MS symptom self-awareness and may help overall fatigue management.Healthcare system preparation must prepare to alleviate increased carer workload at times of crisis.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Pandemics , Australia , Smoke
16.
Disabil Rehabil ; 45(12): 1969-1974, 2023 06.
Article in English | MEDLINE | ID: mdl-35666818

ABSTRACT

PURPOSE: Physical activity (PA) participation offers many benefits for persons with multiple sclerosis (MS). Persons with MS are significantly less active than the general population; however, there is insufficient evidence regarding the association between geographical remoteness and PA participation in persons with MS. We identify PA levels across levels of rurality in an Australian MS population. MATERIALS AND METHODS: The Australian MS Longitudinal Study collects regular survey data from persons with MS in Australia, including demographic, clinical, and health behavioural data. Physical activity engagement was identified with the International Physical Activity Questionnaire-short form and geographical remoteness was identified from participants' postcode using the Access and Remoteness Index for Australia. Hurdle regression analysis examined the relationship between remoteness and PA participation, and level of PA, after controlling for confounding. RESULTS: Data from 1260 respondents showed that 24% of persons with MS did not participate in any PA. Remoteness was not associated with the participation in any PA (OR 1.04; 89% highest density probability interval (HDPI) estimate 0.88, 1.22). Amongst those with any PA (n = 960), those living in more remote areas had, on average, higher levels of PA (RR 1.21; 89% HDPI estimate 1.11, 1.34). CONCLUSIONS: Physical activity promotion does not need to differ based on geographical location. Implications for rehabilitationAlmost one quarter of persons with MS in our study recorded no participation in any physical activity (PA).Healthcare practitioners are encouraged to include the promotion of PA as part of MS management.Physical activity participation is similar for persons with MS across different geographical locations.Physical activity promotion does not need to differ based on geographical location.


Subject(s)
Multiple Sclerosis , Humans , Australia , Exercise , Longitudinal Studies , Rural Population
17.
Nat Rev Neurol ; 18(12): 723-734, 2022 12.
Article in English | MEDLINE | ID: mdl-36369488

ABSTRACT

Social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are the non-medical factors that influence health outcomes. Evidence indicates that health behaviours, comorbidities and disease-modifying therapies all contribute to multiple sclerosis (MS) outcomes; however, our knowledge of the effects of social determinants - that is, the 'risks of risks' - on health has not yet changed our approach to MS. Assessing and addressing social determinants of health could fundamentally improve health and health care in MS; this approach has already been successful in improving outcomes in other chronic diseases. In this narrative Review, we identify and discuss the body of evidence supporting an effect of many social determinants of health, including racial background, employment and social support, on MS outcomes. It must be noted that many of the published studies were subject to bias, and screening tools and/or practical interventions that address these social determinants are, for the most part, lacking. The existing work does not fully explore the potential bidirectional and complex relationships between social determinants of health and MS, and the interpretation of findings is complicated by the interactions and intersections among many of the identified determinants. On the basis of the reviewed literature, we consider that, if effective interventions targeting social determinants of health were available, they could have substantial effects on MS outcomes. Therefore, funding for and focused design of studies to evaluate and address social determinants of health are urgently needed.


Subject(s)
Multiple Sclerosis , Humans , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Social Determinants of Health , Social Support
18.
Clin Transl Immunology ; 11(9): e1416, 2022.
Article in English | MEDLINE | ID: mdl-36188123

ABSTRACT

Objectives: Sporadic Inclusion Body Myositis (IBM) is an inflammatory muscle disease affecting individuals over the age of 45, leading to progressive muscle wasting, disability and loss of independence. Histologically, IBM is characterised by immune changes including myofibres expressing major histocompatibility complex molecules and invaded by CD8+ T cells and macrophages, and by degenerative changes including protein aggregates organised in inclusion bodies, rimmed vacuoles and mitochondrial abnormalities. There is currently no cure, and regular exercise is currently the only recognised treatment effective at limiting muscle weakening, atrophy and loss of function. Testosterone exerts anti-inflammatory effects, inhibiting effector T-cell differentiation and pro-inflammatory cytokine production. Methods: We conducted a double-blind, placebo-controlled, cross-over trial in men with IBM, to assess whether a personalised progressive exercise training combined with application of testosterone, reduced the inflammatory immune response associated with this disease over and above exercise alone. To assess intervention efficacy, we immunophenotyped blood immune cells by flow cytometry, and measured serum cytokines and chemokines by Luminex immunoassay. Results: Testosterone supplementation resulted in modest yet significant count reduction in the classical monocyte subset as well as eosinophils. Testosterone-independent immunoregulatory effects attributed to exercise included altered proportions of some monocyte, T- and B-cell subsets, and reduced IL-12, IL-17, TNF-α, MIP-1ß and sICAM-1 in spite of interindividual variability. Conclusion: Overall, our findings indicate anti-inflammatory effects of exercise training in IBM patients, whilst concomitant testosterone supplementation provides some additional changes. Further studies combining testosterone and exercise would be worthwhile in larger cohorts and longer testosterone administration periods.

19.
BMJ Open ; 12(6): e055796, 2022 06 09.
Article in English | MEDLINE | ID: mdl-35680262

ABSTRACT

BACKGROUND: Comorbid depression is prevalent in people with multiple sclerosis (MS). Depression is commonly untreated or undertreated, thus, there is a need for effective and safe interventions and current guidelines recommend psychological and pharmaceutical interventions for people with MS. However, research suggests that other interventions, such as exercise, could also be effective. The comparative efficacy and safety of intervention modalities have not been quantified.We plan to conduct a systematic review and network meta-analysis to compare efficacy and safety of psychological, pharmaceutical, physical and magnetic stimulation interventions for depression in people with MS. METHODS AND ANALYSIS: We will search EMBASE, Medline, Cochrane CENTRAL, APA PsycINFO, Web of Science, CINAHL and PEDro from inception to 31 December 2021. Search terms will stem from three concepts: MS, depression and randomised controlled trials. Included studies will be randomised controlled trials, where participants are people with MS randomised to receive one of the aforementioned intervention types, and depression or depressive symptoms is the primary outcome, only outcome or secondary outcome with an a priori power calculation. Screening, data extraction and risk of bias assessment (using the Risk of Bias 2 tool) will be conducted independently by two reviewers. If possible, we will synthesise the evidence by fitting a frequentist network meta-analysis model with multivariate random effects, or a pairwise random-effects meta-analysis model. For each model, efficacy will be measured using a standardised mean difference, and safety using an OR. We plan to provide summary measures including forest plots, a geometry of the network, surface under the cumulative ranking curve, and a league table, and perform subgroup analyses. Otherwise, a narrative review will be provided. ETHICS AND DISSEMINATION: Ethics is not required for a systematic review and network meta-analysis. Results will be published in a peer reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42020209803.


Subject(s)
Depression , Multiple Sclerosis , Comorbidity , Depression/therapy , Humans , Meta-Analysis as Topic , Multiple Sclerosis/complications , Network Meta-Analysis , Pharmaceutical Preparations , Randomized Controlled Trials as Topic , Systematic Reviews as Topic
20.
Arch Phys Med Rehabil ; 103(10): 2009-2015, 2022 10.
Article in English | MEDLINE | ID: mdl-35760106

ABSTRACT

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.


Subject(s)
COVID-19 , Multiple Sclerosis , Exercise , Humans , Pandemics , Surveys and Questionnaires , Technology
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