Adherence to physical rehabilitation delivered via tele-rehabilitation for people with multiple sclerosis: a scoping review protocol.

INTRODUCTION: Using tele-rehabilitation methods to deliver exercise, physical activity (PA) and behaviour change interventions for people with multiple sclerosis (pwMS) has increased in recent years, especially since the SARS-CoV-2 pandemic. This scoping review aims to provide an overview of the literature regarding adherence to therapeutic exercise and PA delivered via tele-rehabilitation for pwMS. METHODS AND ANALYSIS: Frameworks described by Arksey and O'Malley and Levac et al underpin the methods. The following databases will be searched from 1998 to the present: Medline (Ovid), Embase (Ovid), CINAHL (EBSCOhost), Health Management Information Consortium Database, ProQuest Dissertations and Theses Global, Pedro, Cochrane Central Register of Controlled Trials, US National Library of Medicine Registry of Clinical Trials, WHO International Clinical Trials Registry Platform portal and The Cochrane Database of Systematic Reviews. To identify papers not included in databases, relevant websites will be searched. Searches are planned for 2023. With the exception of study protocols, papers on any study design will be included. Papers reporting information regarding adherence in the context of prescribed therapeutic exercise and PA delivered via tele-rehabilitation for pwMS will be included. Information relating to adherence may comprise; methods of reporting adherence, adherence levels (eg, exercise diaries, pedometers), investigation of pwMS' and therapists' experiences of adherence or a discussion of adherence. Eligibility criteria and a custom data extraction form will be piloted on a sample of papers. Quality assessment of included studies will use Critical Appraisal Skills Programme checklists. Data analysis will involve categorisation, enabling findings relating to study characteristics and research questions to be presented in narrative and tabular format. ETHICS AND DISSEMINATION: Ethical approval was not required for this protocol. Findings will be submitted to a peer-reviewed journal and presented at conferences. Consultation with pwMS and clinicians will help to identify other dissemination methods.

A Systematic Review of Neurofeedback for the Management of Motor Symptoms in Parkinson's Disease.

BACKGROUND: Neurofeedback has been proposed as a treatment for Parkinson's disease (PD) motor symptoms by changing the neural network activity directly linked with movement. However, the effectiveness of neurofeedback as a treatment for PD motor symptoms is unclear. AIM: To systematically review the literature to identify the effects of neurofeedback in people with idiopathic PD; as defined by measurement of brain activity; motor function; and performance. DESIGN: A systematic review. Included Sources and Articles: PubMed; MEDLINE; Cinhal; PsychoInfo; Prospero; Cochrane; ClinicalTrials.gov; EMBASE; Web of Science; PEDro; OpenGrey; Conference Paper Index; Google Scholar; and eThos; searched using the Population-Intervention-Comparison-Outcome (PICO) framework. Primary studies with the following designs were included: randomized controlled trials (RCTs), non-RCTs; quasi-experimental; pre/post studies; and case studies. RESULTS: This review included 11 studies out of 6197 studies that were identified from the literature search. Neuroimaging methods used were fMRI; scalp EEG; surface brain EEG; and deep brain EEG; where 10-15 Hz and the supplementary motor area were the most commonly targeted signatures for EEG and fMRI, respectively. Success rates for changing one's brain activity ranged from 47% to 100%; however, both sample sizes and success criteria differed considerably between studies. While six studies included a clinical outcome; a lack of consistent assessments prevented a reliable conclusion on neurofeedback's effectiveness. Narratively, fMRI neurofeedback has the greatest potential to improve PD motor symptoms. Two main limitations were found in the studies that contributed to the lack of a confident conclusion: (1) insufficient clinical information and perspectives (e.g., no reporting of adverse events), and (2) limitations in numerical data reporting (e.g., lack of explicit statistics) that prevented a meta-analysis. CONCLUSIONS: While fMRI neurofeedback was narratively the most effective treatment; the omission of clinical outcome measures in studies using other neurofeedback approaches limits comparison. Therefore, no single neurofeedback type can currently be identified as an optimal treatment for PD motor symptoms. This systematic review highlights the need to improve the inclusion of clinical information and more robust reporting of numerical data in future work. Neurofeedback appears to hold great potential as a treatment for PD motor symptoms. However, this field is still in its infancy and needs high quality RCTs to establish its effectiveness. Review Registration: PROSPERO (ID: CRD42020191097).

Scope, context and quality of telerehabilitation guidelines for physical disabilities: a scoping review.

OBJECTIVE: To identify the available guidance and training to implement telerehabilitation movement assessments for people (adults and children) with a physical disability, including those recovering from COVID-19. DESIGN: Rapid scoping review. INCLUDED SOURCES AND ARTICLES: PubMed, CINAHL, PsychInfo, Cochrane, Embase, Web of Science, PEDro, UK Health Forum, WHO, National Archives and NHS England were searched using the participant-concept-context framework from 2015 to August 2020. Primary studies that recruited individuals with physical disabilities and guidance documents aimed at providers to implement movement-related telerehabilitation were included. RESULTS: 23 articles (11 primary research studies, 3 systematic reviews and 9 guidance documents) were included out of 7857 that were identified from the literature search. Two main issues were found: (1) telerehabilitation guidance (from both research studies and guidance documents) was not specific to movement-related assessment and (2) most primary research studies provided neither guidance nor training of movement-specific assessment to practitioners. Of the COVID-19 related guidance, two articles reported COVID-19 management that only referred to identifying COVID-19 status without references to specific movement-related guidance. CONCLUSIONS: Telerehabilitation guidance and training have existed pre-COVID-19, yet the lack of specific movement-related information and provider support is surprising. This gap must be addressed to optimise effective implementation of remote assessments for those with physical disabilities. REVIEW REGISTRATION: Open Science Framework: osf.io/vm6sp.

"I'm in a very good frame of mind": a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis.

OBJECTIVES: The study aim was to explore the experiences of people with progressive multiple sclerosis (MS) and their standing assistants during their participation in Standing Up in Multiple Sclerosis, a randomised controlled trial (RCT) of a home-based, self-managed standing frame programme. DESIGN: A qualitative approach, using audio diary methodology was used to collect data contemporaneously. Diary data were transcribed verbatim and analysed using thematic analysis. SETTING: Participants were recruited from eight healthcare organisations in two regions of the UK. The intervention was home-based. PARTICIPANTS: As part of the RCT, 140 participants were randomly allocated to either usual care or usual care plus a standing frame programme. Using a sampling matrix 12 people with progressive MS (6 female, aged 35-71 years, Expanded Disability Status Scale 6.5-8.0) and 8 standing assistants (4 female) kept audio diaries of their experiences. INTERVENTION: The standing frame programme involved two face-to-face home-based physiotherapy sessions to set up the standing frame programme, supplemented by educational material designed to optimise self-efficacy. Participants were encouraged to stand for at least 30 min, three times a week for the 36-week study period. RESULTS: Four main themes were identified: "Feeling like the old me"; 'Noticing a difference'; "I want to do it right" and "You have a good day, you have a bad day". CONCLUSIONS: Supported standing helped people with progressive MS feel more like their old selves and provided a sense of normality and enjoyment. People noticed improvements in physical and psychological symptoms, which were often associated with increased participation in activities they valued. Provision of support from a physiotherapist and recognition of the variable nature of the condition were highlighted as factors to consider when establishing a standing programme. TRIAL REGISTRATION NUMBER: ISRCTN69614598.

INSoles To Ease Pressure (INSTEP) Study: a multicentre, randomised controlled feasibility study to compare the effectiveness of a novel instant optimised insole with a standard insole for people with diabetic neuropathy: a study protocol.

INTRODUCTION: Foot ulceration is a multifactorial complication of diabetes. Therapeutic insoles and footwear are frequently used to reduce elevated tissue pressures associated with risk of foot ulceration. A novel protocol using in-shoe pressure measurement technology to provide an instant optimised insole and house shoe solution has been developed, with the aim of reducing foot ulceration. AIM: This study aims to assess the feasibility of conducting a multicentre randomised controlled trial to compare the effectiveness of a novel instant optimised insole with a standard insole for people with diabetic neuropathy. METHODS AND ANALYSIS: This study is a participant and assessor blinded, randomised, multicentre parallel group feasibility trial with embedded qualitative study. Seventy-six participants will be recruited from three podiatry clinics and randomised to an optimised insole plus usual care (intervention group) or standard insole plus usual care (control group) using a minimisation by randomisation procedure by study centre and previous ulcer status. Assessment visits and data collection will be at baseline, 3 months, 6 months and 12 months. Feasibility and acceptability of the trial procedures will be determined in terms of recruitment and retention rates, data completion rates, intervention adherence and effectiveness of the blinding.Assessment of the appropriateness and performance of outcome measures will inform selection of the primary and secondary outcomes and sample size estimate for the anticipated definitive randomised controlled trial. Clinical outcomes include incidence of plantar foot ulceration and change in peak plantar pressure. Twelve participants (four from each centre) and three treating podiatrists (one from each centre) will be interviewed to explore their experiences of receiving and delivering the intervention. ETHICS AND DISSEMINATION: The study was approved by the South-West Exeter Research Ethics Committee. Findings will be disseminated through conference presentations, public platforms and academic publications. TRIALS REGISTRATION NUMBER: ISRCTN16011830; Pre-results.

Effectiveness of and User Experience With Web-Based Interventions in Increasing Physical Activity Levels in People With Multiple Sclerosis: A Systematic Review.

Background: Supporting people with multiple sclerosis (MS) to achieve and maintain recommended levels of physical activity is important but challenging. Web-based interventions are increasingly being used to deliver targeted exercise programs and promote physical activity. Purpose: The purpose of this study was to systematically review current evidence regarding the effectiveness and user experience of web-based interventions in increasing physical activity in people with MS. Data Sources: MEDLINE, EMBASE, CINAHL, AMED, PEDro, PsychInfo, Web of Sciences, The Cochrane Library, and gray literature were searched from 1990 to September 2016. Study Selection: English language articles reporting the use of web-based interventions to increase physical activity in adults with MS were included. Eligible quantitative studies were of any design and reported a measure of physical activity. Qualitative studies exploring users' experiences in any context were included. Of the 881 articles identified, 9 met the inclusion criteria. Data Extraction: Two reviewers independently assessed methodological quality and extracted data using standardized critical appraisal and data extraction tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data Synthesis: Meta-analysis of self-reported physical activity questionnaire data from 4 studies demonstrated a standardized mean difference of 0.67 (95% CI = 0.43-0.92), indicating a positive effect in favor of the web-based interventions. Narrative review of accelerometry data from 3 studies indicated increases in objectively measured physical activity. No qualitative studies met the inclusion criteria. Limitations: In the 9 included articles, only 2 different interventions (used with people who were ambulant) were reported. Conclusions: Web-based interventions had a short-term positive effect on self-reported physical activity in people who had MS and were ambulant. Evidence is not currently available to support or refute their use in the long-term or with people who are not ambulant.

Effects of superficial heating and insulation on walking speed in people with hereditary and spontaneous spastic paraparesis: A randomised crossover study.

OBJECTIVES: Cooling of the lower limb in people with Hereditary and Spontaneous Spastic Paraparesis (pwHSSP) has been shown to affect walking speed and neuromuscular impairments. The investigation of practical strategies, which may help to alleviate these problems is important. The potential of superficial heat to improve walking speed has not been explored in pwHSSP. Primary objective was to explore whether the application of superficial heat (hot packs) to lower limbs in pwHSSP improves walking speed. Secondary objective was to explore whether wearing insulation after heating would prolong any benefits. METHODS: A randomised crossover study design with 21 pwHSSP. On two separate occasions two hot packs and an insulating wrap (Neo-G™) were applied for 30minutes to the lower limbs of pwHSSP. On one occasion the insulating wrap was maintained for a further 30minutes and on the other occasion it was removed. Measures of temperature (skin, room and core), walking speed (10 metre timed walk) and co-ordination (foot tap time) were taken at baseline (T1), after 30 mins (T2) and at one hour (T3). RESULTS: All 21 pwHSSP reported increased lower limb stiffness and decreased walking ability when their legs were cold. After thirty minutes of heating, improvements were seen in walking speed (12.2%, P<0.0001, effect size 0.18) and foot tap time (21.5%, P<0.0001, effect size 0.59). Continuing to wear insulation for a further 30minutes gave no additional benefit; with significant improvements in walking speed maintained at one hour (9.9%, P>0.001) in both conditions. CONCLUSIONS: Application of 30minutes superficial heating moderately improved walking speed in pwHSSP with effects maintained at 1hour. The use of hot packs applied to lower limbs should be the focus of further research for the clinical management of pwHSSP who report increased stiffness of limbs in cold weather and do not have sensory deficits.

Effects of Pilates-Based Core Stability Training in Ambulant People With Multiple Sclerosis: Multicenter, Assessor-Blinded, Randomized Controlled Trial.

BACKGROUND: Pilates exercise is often undertaken by people with multiple sclerosis (MS) who have balance and mobility difficulties. OBJECTIVES: The primary aim of the study was to compare the effects of 12 weeks of Pilates exercises with relaxation on balance and mobility. Secondary aims were: (1) to compare standardized exercises with relaxation and (2) to compare Pilates exercises with standardized exercises. METHODS: A multicenter, assessor-blinded, randomized controlled trial was conducted. Participants with Expanded Disability Status Scale scores of 4.0 to 6.5 were randomly allocated to groups receiving 12 weeks of Pilates exercises, standardized exercises, or relaxation. Assessments were undertaken at baseline and weeks 12 and 16 (primary outcome measure: 10-Meter Timed Walk Test [10MTW]). RESULTS: One hundred participants (mean age=54 years, 74% female) were randomized to study groups. Six participants relapsed (withdrew from the study), leaving 94 participants for intention-to-treat analysis. There was no significant difference in mean 10MTW measurements between the Pilates and relaxation groups. At 12 weeks, there was a mean reduction of 4.2 seconds for the standardized exercise group compared with the relaxation group (95% confidence interval [relaxation group minus standardized exercise group measurements]=0.0, 8.4) and a mean reduction of 3.7 seconds for the Pilates group compared with the standardized exercise group (95% confidence interval [Pilates group minus standardized exercise group measurements]=-0.4 to 7.8). At 16 weeks, mean 10MTW times for the standardized exercise group remained quicker than those for the Pilates and relaxation groups, although the differences were nonsignificant. There were no significant differences between the Pilates and relaxation groups for any secondary outcome measure. LIMITATIONS: In this study, therapists were limited to a standardized basket of exercises that may have affected the study outcomes. Furthermore, choosing measures such as posturography to assess balance, accelerometry to assess walking, or a specific trunk assessment scale might have been more responsive in detecting changes in outcome. CONCLUSION: Participants did not improve significantly, either in the short term or at the 4-week follow-up, on the 10MTW after 12 weeks of Pilates exercises compared with 12 weeks of relaxation.

Identification of risk factors for falls in multiple sclerosis: a systematic review and meta-analysis.

BACKGROUND: Falls are a significant issue in people with multiple sclerosis (MS), with research demonstrating fall rates of more than 50%. PURPOSE: The purpose of this study was to evaluate the risk factors associated with falling in people with MS. DATA SOURCES: Mixed search methods were used, including computer-based and manual searches. Additionally, hand searches of reference lists and conference abstracts were performed. All literature published from the source's earliest date to January 2012 was included; only full-text English-language sources (or those where a translation was available) were included. STUDY SELECTION: Eligibility criteria specified articles evaluating any aspect of fall risk in adults with a confirmed MS diagnosis, where the incidence of falling as determined by prospective or retrospective participant report was included. DATA EXTRACTION: Data were extracted independently by 2 reviewers using a written protocol and standardized extraction documentation. Detailed assessment of each article was independently undertaken by both reviewers, including assessment of study quality using an adaptation of the Newcastle Ottawa Scale plus extraction of key data (participant characteristics, fall incidence, and outcomes). DATA SYNTHESIS: The final review comprised 8 articles with a total of 1,929 participants; 1,037 (53.75%) were classified as fallers. Eighteen different risk factors were assessed within the included studies. Meta-analysis demonstrated an increase in fall risk associated with impairments of balance and cognition, progressive MS, and use of a mobility aid. Narrative review of the qualitative articles and those factors where meta-analysis was not possible also was undertaken. LIMITATIONS: Variation in assessment, analysis, and reporting methods allowed meta-analysis for only 4 factors. CONCLUSION: There is limited evidence of the factors associated with fall risk in people with MS. Further methodologically robust studies are needed.

Should patients participate in clinical decision making? An optimised balance block design controlled study of goal setting in a rehabilitation unit.

OBJECTIVES: The recent National Service Framework for Long Term Conditions recommends that patients participate more in decision making about their care. However, few protocols exist to support this. One potentially useful method is goal setting, but little has been done to evaluate the added value of increasing patient participation in this way. Therefore, this study examined the impact of an increased participation goal setting protocol in a neurorehabilitation setting. DESIGN: The study was an AB optimised balance block design with each block lasting 3 months, over an 18 month period. SETTING AND PARTICIPANTS: Patients (n = 201) were recruited from an inpatient neurological rehabilitation unit. INTERVENTIONS: Patients (n = 100) recruited in phase A were involved in "usual practice" goal setting. Patients (n = 101) recruited in phase B were involved in "increased participation" goal setting, which included a protocol to help them define and prioritise their own goals. MAIN OUTCOME MEASURES: Patients' perceptions of the relevance of goal setting and their autonomy within the process; the number, type and outcome of goals; and level of functional ability. RESULTS: Phase B patients ("increased participation") set fewer goals, of which significantly more were participation related. These patients perceived the goals to be more relevant, and expressed greater autonomy and satisfaction with goal setting. There were no differences in functional outcomes between the groups. CONCLUSION: This study has shown that patients prefer increased participation in the goal setting process over standard procedures, perceiving their goals as more relevant and rehabilitation more patient centred despite the absence of functional gains. Effective patient centred care can be realised by using structures that help support patients to identify and communicate their priorities. As such, our findings suggest patients would benefit from greater participation in this aspect of clinical decision making.

Socio-demographic variables are limited predictors of health status in multiple sclerosis.

BACKGROUND AND OBJECTIVES: Self-reported health status measures reflect disease impact from the patient's perspective. However, such measures are not designed for individual patient use and are rarely used to guide clinical practice. Nevertheless, if strong predictors of health status can be demonstrated in large datasets, these could be used to identify people at risk of poor health states and help target interventions. The aim of this study was to examine the predictive value of routinely collected socio-demographic variables on health status. METHOD: Data for 638 patients with multiple sclerosis (MS) on the eight health dimensions of the Medical Outcomes Study 36-item Short Form Health Survey (SF-36) were collected either by a postal survey or hospital attendance and analysed by multiple regression analyses. RESULTS: Several sociodemographic variables, such as unemployment and manual social class had some predictive value on health status, but the effect was not strong (maximum cumulative variance explained 53 %). CONCLUSIONS: Sociodemographic variables that we studied were limited predictors of health status in MS and are of limited value in guiding clinical practice.