The Experience of Physical Recovery and Physical Rehabilitation Following Hospital Discharge for Intensive Care Survivors-A Qualitative Systematic Review.

BACKGROUND: Over 120,000 people in the UK survive critical illness each year, with over 60% of these experiencing mobility issues and reduced health-related quality of life after discharge home. This qualitative systematic review aimed to explore critical care survivors' perceptions, opinions, and experiences of physical recovery and physical rehabilitation following hospital discharge. METHODS: This review followed the Joanna Briggs Institute (JBI) methodology with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and was conducted between January 2020 and June 2022. The search was conducted using the following databases: Embase, CINAHL, Medline Ovid, Cochrane, and the Joanna Briggs Institute, and sources of grey literature were searched for eligible studies. Qualitative studies focused on physical rehabilitation or recovery, involving adult survivors of critical illness who had been discharged from hospital. RESULTS: A total of 7 of 548 identified studies published in 2007-2019 were eligible for inclusion. The findings indicate that qualitative evidence around the experiences of physical recovery and rehabilitation interventions following discharge home after critical illness is limited. Three synthesised findings were identified: 'Positivity, motivation and hope'; 'Recovery is hard and patients need support'; and 'Patients experience challenges in momentum of physical recovery'. CONCLUSIONS: Survivors struggle to access healthcare professionals and services following discharge home, which influences the momentum of physical recovery. Supervised exercise programmes had a positive impact on the perception of recovery and motivation. However, 'simple' structured exercise provision will not address the range of challenges experienced by ICU survivors. Whilst some factors influencing physical recovery are similar to other groups, there are unique issues experienced by those returning home after critical illness. Further research is needed to identify the support or interventions survivors feel would meet their needs and assist their physical recovery. This study was prospectively registered with Prospero on 3/2/2020 with registration number CRD42020165290.

The MoXFo initiative - study design: Considerations related to study design and methodology in exercise research for people with multiple sclerosis.

BACKGROUND: Exercise as a subset of physical activity is a cornerstone in the management of multiple sclerosis (MS) based on its pleiotropic effects, but continued progression of the field requires better future designs and methodologies. OBJECTIVES: This paper outlines the work of the 'Study design and methodology' group of the MoXFo (moving exercise research forward) initiative, and addresses critical aspects and future directions when defining the research question of interest, and subsequently, designing the study and exercise intervention in MS patients. METHODS: The work is based on the formation of an international expert panel formed within the MoXFo initiative. We provide a structured and concise synthesis of exercise-specific MS research challenges and considerations when designing randomized controlled trials (RCTs). RESULTS: Challenges and considerations are presented using the Patient population, Intervention, Comparator, Outcomes, Timing, Setting (PICOTS) framework, thereby forming a new and specific MS exercise PICOTS framework. CONCLUSION: We propose that researchers should carefully consider and align all elements of this MS exercise PICOTS framework when developing future research questions and study designs, ultimately improving the quality of new exercise studies in people with MS.

Protocol for a pragmatic feasibility randomised controlled trial of peer coaching for adults with long-term conditions: PEER CONNECT.

INTRODUCTION: Patients with low levels of knowledge, skills and confidence to manage their health and well-being (activation) are more likely to have unmet health needs, delay seeking healthcare and need emergency care. National Health Service England estimates that this may be applicable to 25%-40% of patients with long-term health conditions. Volunteer peer coaching may support people to increase their level of activation. This form of intervention may be particularly effective for people with low levels of activation. METHODS AND ANALYSIS: This single site, two-arm randomised controlled trial has been designed to assess the feasibility of conducting a definitive trial of volunteer peer health and well-being coaching for people with long-term health conditions (multiple sclerosis, rheumatic diseases or chronic pain) and low activation. Feasibility outcomes include recruitment and retention rates, and intervention adherence. We will measure patient activation, mental health and well-being as potential outcomes for a definitive trial. These outcomes will be summarised descriptively for each time point by allocated group and help to inform sample size calculation for the definitive trial. Criteria for progression to a full trial will be used. ETHICS AND DISSEMINATION: Ethical approval has been granted by the London - Surrey Research Ethics Committee, reference 21/LO/0715. Results from this feasibility trial will be shared directly with participants, presented at local, regional and national conferences and published in an open-access journal. TRIAL REGISTRATION NUMBER: ISRCTN12623577.

Is Aerobic or Resistance Training the Most Effective Exercise Modality for Improving Lower Extremity Physical Function and Perceived Fatigue in People With Multiple Sclerosis? A Systematic Review and Meta-analysis.

OBJECTIVE: The purpose of this systematic review was to investigate whether aerobic training (AT) or resistance training (RT) is most effective in terms of improving lower limb physical function and perceived fatigue in persons with multiple sclerosis (PwMS). DATA SOURCES: Nine databases (MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, Allied and Complementary Medicine Database, Physiotherapy Evidence Database, SPORTDiscus, PsycINFO, Web of Science, and Scopus) were electronically searched in April 2020. STUDY SELECTION: Included studies were randomized controlled trials (RCTs) involving PwMS attending 1 of 2 exercise interventions: AT or RT. Studies had to include at least 1 objective or self-reported outcome of lower extremity physical function and/or perceived fatigue. DATA EXTRACTION: Data were extracted using a customized spreadsheet, which included detailed information on patient characteristics, interventions, and outcomes. The methodological quality of the included studies was independently assessed by 2 reviewers using the Tool for Assessment of Study Quality for Reporting on Exercise rating scale. DATA SYNTHESIS: Twenty-seven articles reporting data from 22 RCTS (AT=14, RT=8) including 966 PwMS. The 2 modalities were found to be equally effective in terms of improving short walk test (AT: effect size [ES]=0.33 [95% confidence interval (CI), -1.49 to 2.06]; RT: ES=0.27 [95% CI, 0.07-0.47]) and long walk test performance (AT: ES=0.37 [95% CI, -0.04 to 0.78]; RT: ES=0.36 [95% CI, -0.35 to 1.08]), as well as in reducing perceived fatigue (AT: ES=-0.61 [95% CI, -1.10 to -0.11]; RT: ES=-0.41 [95% CI, -0.80 to -0.02]). Findings on other functional mobility tests along with self-reported walking performance were sparse and inconclusive. CONCLUSIONS: AT and RT appear equally highly effective in terms of improving lower extremity physical function and perceived fatigue in PwMS. Clinicians can thus use either modality to target impairments in these outcomes. In a future perspective, head-to-head exercise modality studies are warranted. Future MS exercise studies are further encouraged to adapt a consensus "core battery" of physical function tests to facilitate a detailed comparison of results across modalities.

Technologies to Support Assessment of Movement During Video Consultations: Exploratory Study.

BACKGROUND: Understanding and assessing patients' body movements is essential for physical rehabilitation but is challenging in video consultations, as clinicians are frequently unable to see the whole patient or observe the patient as they perform specific movements. OBJECTIVE: The objective of this exploratory study was to assess the use of readily available technologies that would enable remote assessment of patient movement as part of a video consultation. METHODS: We reviewed the literature and available technologies and chose four technologies (Kubi and Pivo desktop robots, Facebook Portal TV, wide-angle webcam), in addition to help from a friend or a simple mobile phone holder, to assist video consultations. We used 5 standard assessments (sit-to-stand, timed "Up & Go," Berg Balance Test, ankle range of motion, shoulder range of motion) as the "challenge" for the technology. We developed an evaluation framework of 6 items: efficacy, cost, delivery, patient setup, clinician training and guidance, and safety. The coauthors, including 10 physiotherapists, then took the roles of clinician and patient to explore 7 combinations of 5 technologies. Subsequently, we applied our findings to hypothetical patients based on the researchers' family members and clinical experience. RESULTS: Kubi, which allowed the clinician to remotely control the patient's device, was useful for repositioning the tablet camera to gain a better view of the patient's body parts but not for tracking movement. Facebook Portal TV was useful, but only for upper body movement, as it functions based on face tracking. Both Pivo, with automated full body tracking using a mobile phone, and the wide-angle webcam for a laptop or desktop computer show promise. Simple solutions such as having a friend operate a mobile phone and use of a mobile phone holder also have potential. The setup of these technologies will require better instructions than are currently available from suppliers, and successful use will depend on the technology readiness of patients and, to some degree, of clinicians. CONCLUSIONS: Technologies that may enable clinicians to assess movement remotely as part of video consultations depend on the interplay of technology readiness, the patient's clinical conditions, and social support. The most promising off-the-shelf approaches seem to be use of wide-angle webcams, Pivo, help from a friend, or a simple mobile phone holder. Collaborative work between patients and clinicians is needed to develop and trial technological solutions to support video consultations assessing movement.

"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.

Adherence and drop-out in randomized controlled trials of exercise interventions in people with multiple sclerosis: A systematic review and meta-analyses.

BACKGROUND: The short-term benefits of exercise in people with multiple sclerosis (MS) are well established. To sustain benefits exercise needs to continue long-term. Despite important clinical implications, no systematic reviews have synthesized evidence on adherence and drop-out in MS exercise interventions. OBJECTIVES: 1) To summarize reported adherence and drop-out data from randomized controlled trials (RCTs) of exercise interventions, and 2) identify moderators related to adherence and drop-out. METHODS: Nine databases were electronically searched in October 2018. Included studies were RCTs of exercise interventions in adults with MS published from January 1993 to October 2018. Abstracts and full texts were independently screened and selected for inclusion by two reviewers. Methodological quality was assessed using the TESTEX rating scale. RESULTS: Ninety three articles reporting 81 studies were included. Forty one studies (51%) reported both adherence and drop-out data during the intervention period with three (4%) also reporting follow-up data. Of the 41 studies, < 25% pre-defined adherence or described how adherence was measured. Meta-analyses of 59 interventions (41 studies) showed a pooled adherence estimate of 0.87 (95% CI 0.83 to 0.90) and 0.73 (CI 0.68-0.78) when including drop-outs. Mean age, proportion of females and intervention duration were inversely associated with adherence. CONCLUSION: Little consensus existed on definition of adherence or determination of drop-out in MS exercise studies, with reporting generally of poor quality, if done at all. Hence it is largely unknown what can moderate adherence and whether exercise continued following an exercise intervention. Researchers should ensure clear transparent measurement and reporting of adherence and drop-out data in future trials.

A qualitative exploration of the participants' experience of a web-based physiotherapy program for people with multiple sclerosis: Does it impact on the ability to increase and sustain engagement in physical activity?

Background: Web-based exercise and physical activity interventions are being developed as a potential way to help people with multiple sclerosis achieve and maintain increased physical activity levels. Seeking feedback from people who have used such interventions will help guide the development process.Methods: In-depth interviews were used to explore the experiences of participants who used a web-based physiotherapy intervention as part of a feasibility randomized controlled trial. Interviews were audio-recorded, transcribed verbatim and analyzed using thematic analysis.Results: Eleven people (age 28-68) were interviewed. Most perceived that their physical activity had increased, primarily due to completing twice-weekly web-based physiotherapy sessions. Three key themes were identified. 'It's all in one place' encompasses the value of having a convenient and portable program. 'Keeping an eye' captures people's thoughts regarding the supervision offered by the physiotherapist, through the website, and 'Hopes and expectations' reflects the importance of having opportunity to discuss what may be gained from using such a program.Conclusions: This intervention offered a convenient, flexible and portable physiotherapy program which most people perceived helped them achieve and sustain increased levels of physical activity. Talking with people about expectations is important, particularly if a person's condition is deteriorating.IMPLICATIONS FOR REHABILITATIONWhen discussing the potential benefits of exercise programs with people with multiple sclerosis it is important to have honest and open conversations about the expectations of what may be achieved. This is particularly important for people with progressive disease.Web-based interventions may be most valuable to people who are technology literate, seek flexibility regarding where and when to exercise, prefer to exercise independently and have the confidence and skills to self-manage.Trial registration: ClinicalTrials.gov identifier: NCT02508961.

Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis.

BACKGROUND: People severely impaired with progressive multiple sclerosis spend much of their day sitting, with very few options to improve motor function. As a result, secondary physical and psychosocial complications can occur. Effective and feasible self-management strategies are needed to reduce sedentary behaviour and enhance motor function. In this study, we aimed to assess the clinical and cost effectiveness of a home-based, self-managed, standing frame programme. METHODS: SUMS was a pragmatic, multicentre, randomised controlled superiority trial of people with progressive multiple sclerosis and severe mobility impairment, undertaken in eight centres from two regions in the UK. The study had assessor-blinded outcome assessments with use of clinician-rated and patient-rated measures at baseline, 20 weeks, and 36 weeks. After baseline assessment, participants were randomised (1:1) by computer-generated assignment to either a standing frame programme plus usual care or usual care alone. The intervention consisted of two home-based physiotherapy sessions (60 min each) to set up the standing frame programme, supported by six follow-up telephone calls (15 min per call). Participants were asked to stand for 30 min, three times per week over 20 weeks, and encouraged to continue in the longer term, although no further physiotherapy support was provided. The primary clinical outcome was motor function measured by the Amended Motor Club Assessment (AMCA) score at week 36, analysed in the modified intention-to-treat population (excluding only patients who were deemed ineligible after randomisation, those who withdrew from the trial and were unwilling for their previously collected data to be used, or those who did not provide baseline and week 36 measurements). A 9-point AMCA score change was considered clinically meaningful a priori. Adverse events were collected through a daily preformatted patient diary throughout the 36 weeks and analysed in the modified intention-to-treat population. An economic assessment established the resources required to provide the standing frame programme, estimated intervention costs, and estimate cost effectiveness. This trial is registered with the International Standard Randomised Controlled Trials, number ISRCTN69614598. FINDINGS: Between Sept 16, 2015, and April 28, 2017, 285 people with progressive multiple sclerosis were screened for eligibility, and 140 were randomly assigned to either the standing frame group (n=71) or the usual care group (n=69). Of these, 122 completed the primary outcome assessment (61 participants in both groups) for the modified intention-to-treat analysis. The use of the standing frame resulted in a significant increase in AMCA score compared with that for usual care alone, with a fully adjusted between-group difference in AMCA score at 36 weeks of 4·7 points (95% CI 1·9-7·5; p=0·0014). For adverse events collected through patient diaries, we observed a disparity between the two groups in the frequency of short-term musculoskeletal pain (486 [41%] of 1188 adverse events in the standing frame group vs 160 [22%] of 736 adverse events in the usual care group), which was potentially related to the intervention. The musculoskeletal pain lasted longer than 7 days in five participants (two in the standing frame group and three in the usual care group). No serious adverse events related to the study occurred. The standing frame group had a mean 0·018 (95% CI -0·014 to 0·051) additional quality-adjusted life-years (QALYs) compared with those of the usual care group, and the estimated incremental cost-per-QALY was approximately £14 700. INTERPRETATION: The standing frame programme significantly increased motor function in people with severe progressive multiple sclerosis, although not to the degree that was considered a priori as clinically meaningful. The standing frame is one of the first physiotherapy interventions to be effective in this population. We suggest that the programme is feasible as a home-based, self-managed intervention that could be routinely implemented in clinical practice in the UK. FUNDING: UK National Institute of Health Research.

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.

Effectiveness and user experience of web-based interventions for increasing physical activity in people with multiple sclerosis: a comprehensive systematic review protocol.

REVIEW QUESTIONS/OBJECTIVES: The overall aim of this comprehensive systematic review is to explore the use of web-based interventions for increasing physical activity levels in people with a diagnosis of multiple sclerosis (MS).The quantitative objectives are to identify:The qualitative objectives are to.

The effectiveness of various models of primary care-based follow-up after stroke: a systematic review.

AIM: To systematically review studies reporting the effectiveness of various models of follow-up in primary care on a range of outcomes (physical, psychological, social functioning, or quality of life) for survivors of stroke and their caregivers. BACKGROUND: Stroke is a major cause of disability globally. Current UK policy calls for a primary care-based review of healthcare and social-care needs at six weeks and six months after hospital discharge and then annually. METHODS: Trials meeting the pre-defined inclusion criteria were identified by the systematic searching of electronic databases. Data were extracted by two independent researchers. Studies were rated using the McMaster University Quality Assessment Tool. FINDINGS: Nine randomised controlled trials that met the inclusion criteria were identified. These studies included interventions using stroke support workers, care coordinators or case managers. The methodological quality of the studies was variable, and models of care demonstrated inconsistent working relationships with general practitioners. Patients and caregivers receiving formal primary care-based follow-up did not show any gains in physical function, mood, or quality of life when compared with those who did not. Patients and caregivers receiving follow-up were generally more satisfied with some aspects of communication, and had a greater knowledge of stroke. CONCLUSIONS: The limited quality of these studies and the lack of a sound theoretical basis for the development of interventions together highlight the urgent need for high-quality research studies in this area.

Pilot randomized controlled trial to assess the impact of additional supported standing practice on functional ability post stroke.

OBJECTIVE: To investigate whether provision of additional standing practice increases motor recovery and mobility post stroke. DESIGN: A pilot randomized controlled trial. SETTING: A stroke rehabilitation unit in the UK. PARTICIPANTS: Seventeen participants, seven women and ten men, age range 51-92 admitted to the unit 6-58 days post stroke. INTERVENTION: Each participant was randomly allocated into a control (conventional physiotherapy) or treatment (conventional therapy plus an additional session of standing practice) group. The period of intervention ranged from 14 to 28 days dependent upon length of stay on the unit. OUTCOME MEASURES: The Gross Functional Tool Section of the Rivermead Motor Assessment, the Trunk Control Test and the Berg Balance Scale were used on admission to the study, at weekly intervals during the intervention, and at 12 weeks (after discharge). RESULTS: Of the 17 participants recruited, three withdrew from the additional intervention group citing fatigue as a barrier and 15 completed the study. Participants completing additional standing practice demonstrated higher scores in all motor measures at week 12, but this difference was not statistically significant. There was a statistically significant difference (P < 0.05) in the changes in Berg Balance score when comparing week 1 with week 12, in support of the group receiving extra standing practice. CONCLUSIONS: A larger study is required to establish the value of additional standing practice after stroke. This pilot demonstrates that the Gross Functional Tool Section of the Rivermead Motor Assessment and the Berg Balance Scale would be useful in such a study. Fatigue may be a significant barrier to ability to participate in more intensive programmes so screening participants for severe fatigue may be useful.