A pilot exploration of staff and service-user perceptions of a novel digital health technology (Virtual Engagement Rehabilitation Assistant) in complex inpatient rehabilitation.

PURPOSE: Digital health technologies have the potential to advance rehabilitation. The Virtual Engagement Rehabilitation Assistant (VERA) is a digital technology, co-designed to increase service-user engagement and promote self-management. This qualitative study explored staff and service-user perceptions of implementing VERA on a UK complex inpatient rehabilitation ward. METHODS: Purposively sampled service-users were allocated to VERA for up to six weeks. The Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework underpinned service-user post-intervention interviews and staff focus groups, and structured analysis of the data. Seven service-users were interviewed. Nine staff contributed to focus groups. RESULTS: A framework analysis identified themes (and subthemes) structured by the NASSS framework domains: 1. Nature of Clinical Condition, 2. Technology (Ease of Use, Holding Information/Resources in a single Digital Location, Appointments), 3. Value Proposition (Structuring Time, Feedback, Unexpected Benefits) 4. Adopters (Confidence in using Technology, Usefulness), 5. Wider Organisation. Ease of use and storage of key information in a single location were beneficial. Reliability, and provision of accurate and timely feedback to staff and service-users, were identified as essential. CONCLUSIONS: A blended approach is required to meet staff and service-user needs. The potential for VERA in a community setting was identified and requires further investigation. Learning from VERA will support development of other digital technologies and their implementation.

Digital health technologies have the potential to positively impact rehabilitation but may not be suitable for all service-users.Digital health technologies for rehabilitation must be easy to use and reliable.Relevant and informative feedback from the digital health technology was considered essential by both staff and service-users.Utilising a theoretical framework that focuses on key components of implementation was instrumental for development and evaluation of Virtual Engagement Rehabilitation Assistant (VERA).

Investigating the Implementation of Community-Based Stroke Telerehabilitation in England; A Realist Synthesis Study Protocol.

Telerehabilitation (TR) shows promise as a method of remote service delivery, yet there is little guidance to inform implementation in the context of the National Health Service (NHS) in England. This paper presents the protocol for a realist synthesis study aiming to investigate how TR can be implemented to support the provision of high-quality, equitable community-based stroke rehabilitation, and under what conditions. Using a realist approach, we will synthesise information from (1) an evidence review, (2) qualitative interviews with clinicians (n ≤ 30), and patient-family carer dyads (n ≤ 60) from three purposively selected community stroke rehabilitation services in England. Working groups including rehabilitation professionals, service-users and policy-makers will co-develop actionable recommendations. Insights from the review and the interviews will be synthesised to test and refine programme theories that explain how TR works and for whom in clinical practice, and draw key messages for service implementation. This protocol highlights the need to improve our understanding of TR implementation in the context of multidisciplinary, community-based stroke service provision. We suggest the use of a realist methodology and co-production to inform evidence-based recommendations that consider the needs and priorities of clinicians and people affected by stroke.

Understanding the Barriers and Facilitators of Digital Health Technology (DHT) Implementation in Neurological Rehabilitation: An Integrative Systematic Review.

Background: Digital Health technologies (DHT) have potential to deliver intensive, novel and engaging rehabilitation for people with neurological conditions, yet health services lack a strong track record in embedding DHT into practice. The aim of this review was to synthesise factors that have been shown to influence implementation of DHT into neurological rehabilitation. Method: An integrative review was undertaken. An extensive search of MEDLINE, CINAHL, AMED, EMBASE was undertaken. The title and abstract of all retrieved sources were screened against pre-defined criteria. Retained sources underwent full text review. The quality of all included sources was assessed. A meta-ethnographic synthesis explored commonalities and contradictions of the included studies. Results: Fourteen studies (1 quantitative, 8 qualitative and 5 mixed methods) were included. Eleven implementation theories/models/frameworks were used across the 14 studies. Five themes were identified: (i) individual factors; (ii) user experience of the technology; (iii) the content of the intervention; (iv) access to the technology and (v) supporting use. Conclusions: Key factors which appear to influence the implementation of DHT into clinical settings are highlighted. Implementation theories, models and frameworks are under-utilised in DHT rehabilitation research. This needs to be addressed if DHT are to realise their potential in neurological rehabilitation. Registration: The protocol was registered and is available from PROSPERO (CRD42021268984).

Behavior Change Approaches in Digital Technology-Based Physical Rehabilitation Interventions Following Stroke: Scoping Review.

BACKGROUND: Digital health technologies (DHTs) are increasingly used in physical stroke rehabilitation to support individuals in successfully engaging with the frequent, intensive, and lengthy activities required to optimize recovery. Despite this, little is known about behavior change within these interventions. OBJECTIVE: This scoping review aimed to identify if and how behavior change approaches (ie, theories, models, frameworks, and techniques to influence behavior) are incorporated within physical stroke rehabilitation interventions that include a DHT. METHODS: Databases (Embase, MEDLINE, PsycINFO, CINAHL, Cochrane Library, and AMED) were searched using keywords relating to behavior change, DHT, physical rehabilitation, and stroke. The results were independently screened by 2 reviewers. Sources were included if they reported a completed primary research study in which a behavior change approach could be identified within a physical stroke rehabilitation intervention that included a DHT. Data, including the study design, DHT used, and behavior change approaches, were charted. Specific behavior change techniques were coded to the behavior change technique taxonomy version 1 (BCTTv1). RESULTS: From a total of 1973 identified sources, 103 (5%) studies were included for data charting. The most common reason for exclusion at full-text screening was the absence of an explicit approach to behavior change (165/245, 67%). Almost half (45/103, 44%) of the included studies were described as pilot or feasibility studies. Virtual reality was the most frequently identified DHT type (58/103, 56%), and almost two-thirds (65/103, 63%) of studies focused on upper limb rehabilitation. Only a limited number of studies (18/103, 17%) included a theory, model, or framework for behavior change. The most frequently used BCTTv1 clusters were feedback and monitoring (88/103, 85%), reward and threat (56/103, 54%), goals and planning (33/103, 32%), and shaping knowledge (33/103, 32%). Relationships between feedback and monitoring and reward and threat were identified using a relationship map, with prominent use of both of these clusters in interventions that included virtual reality. CONCLUSIONS: Despite an assumption that DHTs can promote engagement in rehabilitation, this scoping review demonstrates that very few studies of physical stroke rehabilitation that include a DHT overtly used any form of behavior change approach. From those studies that did consider behavior change, most did not report a robust underpinning theory. Future development and research need to explicitly articulate how including DHTs within an intervention may support the behavior change required for optimal engagement in physical rehabilitation following stroke, as well as establish their effectiveness. This understanding is likely to support the realization of the transformative potential of DHTs in stroke rehabilitation.

Criteria and Indicators for Centers of Clinical Excellence in Stroke Recovery and Rehabilitation: A Global Consensus Facilitated by ISRRA.

BACKGROUND: The aim of the International Stroke Recovery and Rehabilitation Alliance is to create a world where worldwide collaboration brings major breakthroughs for the millions of people living with stroke. A key pillar of this work is to define globally relevant criteria for centers that aspire to deliver excellent clinical rehabilitation and generate exceptional outcomes for patients. OBJECTIVES: This paper presents consensus work conducted with an international group of expert stroke recovery and rehabilitation researchers, clinicians, and people living with stroke to identify and define criteria and measurable indicators for Centers of Clinical Excellence (CoCE) in stroke recovery and rehabilitation. These were intentionally developed to be ambitious and internationally relevant, regardless of a country's development or income status, to drive global improvement in stroke services. METHODS: Criteria and specific measurable indicators for CoCE were collaboratively developed by an international panel of stroke recovery and rehabilitation experts from 10 countries and consumer groups from 5 countries. RESULTS: The criteria and associated indicators, ranked in order of importance, focused upon (i) optimal outcome, (ii) research culture, (iii) working collaboratively with people living with stroke, (iv) knowledge exchange, (v) leadership, (vi) education, and (vii) advocacy. Work is currently underway to user-test the criteria and indicators in 14 rehabilitation centers in 10 different countries. CONCLUSIONS: We anticipate that use of the criteria and indicators could support individual organizations to further develop their services and, more widely, provide a mechanism by which clinical excellence can be articulated and shared to generate global improvements in stroke care.

Online advice for the symptomatic management of post-stroke fatigue: A scoping review.

BACKGROUND: Limited medical evidence for managing post-stroke fatigue leads stroke survivors to seek information through other sources. This scoping review aimed to identify and assess the range and quality of web-based recommendations for managing post-stroke fatigue. METHODS: Publicly accessible websites providing advice for post-stroke fatigue management were considered for review using the Joanna Briggs Institute's methodology. Using the search term "fatigue stroke", the first two pages of results from each search engine (Google, Yahoo, and Bing) were assessed against predetermined criteria. Findings were reported in accordance with PRISMA-ScR checklist. Quality and readability were also assessed. RESULTS: Fifty-seven websites were identified; 16 primary and 11 linked websites met the inclusion criteria and demonstrated moderate to high quality and high readability. Primary websites were curated by non-government organizations (n = 10/16), companies (n = 4/16) or were media and blog websites (n = 2/16). Additional resources were provided on linked websites. All websites provided non-pharmacological advice, with four also describing pharmacological management. Many websites included advice related to physical activity modification (n = 18/27) and energy conservation strategies (e.g. activity prioritization, planning, pacing) (n = 26/27). Direction to seek health professional advice appeared frequently (n = 16/27). CONCLUSIONS: The quality of publicly available web-based advice for people with post-stroke fatigue was moderate to high in most websites, with high readability. Energy conservation strategies and physical activity modification appear frequently. The general nature of the advice provided on most websites is supported by direction to healthcare professionals (i.e., clinical referral) who may assist in the practical individualization of strategies for managing post-stroke fatigue.

A focus group study of therapists' views on using a novel neuroanimation virtual reality game to deliver intensive upper-limb rehabilitation early after stroke.

BACKGROUND: Intensive training can significantly reduce upper-limb impairments after stroke but delivering interventions of sufficiently high intensity is extremely difficult in routine practice. The MindPod Dolphin® system is a novel neuroanimation experience which provides motivating and intensive virtual reality based training for the upper-limb. However several studies report that health professionals have reservations about using technology in rehabilitation. Therefore, this study sought to explore the views of therapists who had used this novel neuroanimation therapy (NAT) in a clinical centre to deliver intensive for the upper-limb of people after stroke in a phase 2 trial (SMARTS2). METHODS: Four therapists (three female, two physical and two occupational therapists) who delivered NAT participated in a focus group conducted by two independent researchers. The theoretical domains framework and COM-B behaviour change models informed the discussion schedule for the focus group. An inductive approach to content analysis was used. Recordings were transcribed, coded and thematically analysed. Generated key themes were cross-checked with participants. RESULTS: Whilst therapists had some initial concerns about using NAT, these were reduced by training, reference materials and face-to-face technical support. Therapists noted several significant benefits to using NAT including multi-system involvement, carry-over to functional tasks and high levels of patient engagement. CONCLUSIONS: These findings illuminate key areas that clinicians, technology developers and researchers should consider when designing, developing and implementing NAT. Specifically, they highlight the importance of planning the implementation of rehabilitation technologies, ensuring technologies are robust and suggest a range of benefits that might be conferred to patients when using intensive NAT as part of rehabilitation for the upper-limb after stroke.

12-Month changes of muscle strength, body composition and physical activity in adults with dystrophinopathies.

PURPOSE: Muscular dystrophy (MD) is an umbrella term for muscle wasting conditions, for which longitudinal changes in function and body composition are well established in children with Duchenne (DMD), however, changes in adults with DMD and Beckers (BMD), respectively, remain poorly reported. This study aims to assess 12-month changes in lower-limb strength, muscle size, body composition and physical activity in adults with Muscular Dystrophy (MD). METHODS: Adult males with Duchenne MD (DMD; N = 15) and Beckers MD (BMD; N = 12) were assessed at baseline and 12-months for body composition (Body fat and lean body mass (LBM)), Isometric maximal voluntary contraction (Knee-Extension (KEMVC) and Plantar-Flexion (PFMVC)) and physical activity (tri-axial accelerometry). RESULTS: 12-Month change in strength was found as -19% (PFMVC) and -14% (KEMVC) in DMD. 12-Month change in strength in BMD, although non-significant, was explained by physical activity (R2=0.532-0.585). Changes in LBM (DMD) and body fat (BMD) were both masked by non-significant changes in body mass. DISCUSSION: 12-Month changes in adults with DMD appear consistent with paediatric populations. Physical activity appears important for muscle function maintenance. Specific monitoring of body composition, and potential co-morbidities, within adults with MD is highlighted.Implications for rehabilitationQuantitative muscle strength assessment shows progressive muscle weakness in adults with Duchenne Muscular Dystrophy is comparable to paediatric reports (-14 to -19%).Physical activity should be encouraged in adults with Beckers Muscular Dystrophy, anything appears better than nothing.Body composition, rather than body mass, should be monitored closely to identify any increase in body fat.

Comparing a Novel Neuroanimation Experience to Conventional Therapy for High-Dose Intensive Upper-Limb Training in Subacute Stroke: The SMARTS2 Randomized Trial.

BACKGROUND: Evidence from animal studies suggests that greater reductions in poststroke motor impairment can be attained with significantly higher doses and intensities of therapy focused on movement quality. These studies also indicate a dose-timing interaction, with more pronounced effects if high-intensity therapy is delivered in the acute/subacute, rather than chronic, poststroke period. OBJECTIVE: To compare 2 approaches of delivering high-intensity, high-dose upper-limb therapy in patients with subacute stroke: a novel exploratory neuroanimation therapy (NAT) and modified conventional occupational therapy (COT). METHODS: A total of 24 patients were randomized to NAT or COT and underwent 30 sessions of 60 minutes time-on-task in addition to standard care. The primary outcome was the Fugl-Meyer Upper Extremity motor score (FM-UE). Secondary outcomes included Action Research Arm Test (ARAT), grip strength, Stroke Impact Scale hand domain, and upper-limb kinematics. Outcomes were assessed at baseline, and days 3, 90, and 180 posttraining. Both groups were compared to a matched historical cohort (HC), which received only 30 minutes of upper-limb therapy per day. RESULTS: There were no significant between-group differences in FM-UE change or any of the secondary outcomes at any timepoint. Both high-dose groups showed greater recovery on the ARAT (7.3 ± 2.9 points; P = .011) but not the FM-UE (1.4 ± 2.6 points; P = .564) when compared with the HC. CONCLUSIONS: Neuroanimation may offer a new, enjoyable, efficient, and scalable way to deliver high-dose and intensive upper-limb therapy.

Systematic Review and Meta-Analysis of the Effectiveness of Mental Practice for the Upper Limb After Stroke: Imagined or Real Benefit?

OBJECTIVES: This systematic review sought to determine the effectiveness of mental practice (MP) on the activity limitations of the upper limb in individuals after stroke, as well as when, in whom, and how MP should be delivered. DATA SOURCES: Ten electronic databases were searched from November 2009 to May 2020. Search terms included: Arm, Practice, Stroke rehabilitation, Imagination, Paresis, Recovery of function, and Stroke. Studies from a Cochrane review of MP (up to November 2009) were automatically included. The review was registered with the PROSPERO database of systematic reviews (reference no.: CRD42019126044). STUDY SELECTION: Randomized controlled trials of adults after stroke using MP for the upper limb were included if they compared MP to usual care, conventional therapy, or no treatment and reported activity limitations of the upper limb as outcomes. Independent screening was conducted by 2 reviewers. DATA EXTRACTION: One reviewer extracted data using a tool based on the Template for Intervention Description and Replication. Data extraction was independently verified by a second reviewer. Quality was assessed using the PEDro tool. DATA SYNTHESIS: Fifteen studies (n=486) were included and 12 (n=328) underwent meta-analysis. MP demonstrated significant benefit on upper limb activities compared with usual treatment (standardized mean difference [SMD], 0.6; 95% confidence interval [CI], 0.32-0.88). Subgroup analyses demonstrated that MP was most effective in the first 3 months after stroke (SMD, 1.01; 95% CI, 0.53-1.50) and in individuals with the most severe upper limb deficits (weighted mean difference, 7.33; 95% CI, 0.94-13.72). CONCLUSIONS: This review demonstrates that MP is effective in reducing activity limitations of the upper limb after stroke, particularly in the first 3 months after stroke and in individuals with the most severe upper limb dysfunction. There was no clear pattern of the ideal dosage of MP.

To stimulate or not to stimulate? A rapid systematic review of repetitive sensory stimulation for the upper-limb following stroke.

BACKGROUND: Repetitive sensory stimulation (RSS) is a therapeutic approach which involves repeated electrical stimulation of the skin's surface to improve function. This rapid systematic review aimed to describe the current evidence for repetitive sensory stimulation (RSS) in rehabilitation of the upper-limb for people who have had a stroke. MAIN TEXT: Methods: Relevant studies were identified in a systematic search of electronic databases and hand-searching in February 2020. The findings of included studies were synthesized to describe: the safety of RSS, in whom and when after stroke it has been used, the doses used and its effectiveness. RESULTS: Eight studies were included. No serious adverse events were reported. The majority of studies used RSS in participants with mild or moderate impairments and in the chronic stage after stroke. Four studies used RSS in a single treatment session, reporting significant improvements in strength and hand function. Findings from longitudinal studies showed few significant differences between control and experimental groups. Meta-analysis was not possible due to the heterogeneity of included studies. CONCLUSIONS: This review suggests that there is insufficient evidence to support the use of RSS for the upper-limb after stroke in clinical practice. However, this review highlights several clear research priorities including establishing the mechanism and in whom RSS may work, its safety and optimal treatment parameters to improve function of the upper-limb after stroke.

A scoping review of determinants of performance in dressage.

As a first step in achieving an evidence-based classification system for the sport of Para Dressage, there is a clear need to define elite dressage performance. Previous studies have attempted to quantify performance with able-bodied riders using scientific methods; however, definitive measures have yet to be established for the horse and/or the rider. This may be, in part, due to the variety of movements and gaits that are found within a dressage test and also due to the complexity of the horse-rider partnership. The aim of this review is therefore to identify objective measurements of horse performance in dressage and the functional abilities of the rider that may influence them to achieve higher scores. Five databases (SportDiscuss, CINAHL, MEDLINE, EMBASE, VetMed) were systematically searched from 1980 to May 2018. Studies were included if they fulfilled the following criteria: (1) English language; (2) employ objective, quantitative outcome measures for describing equine and human performance in dressage; (3) describe objective measures of superior horse performance using between-subject comparisons and/or relating outcome measures to competitive scoring methods; (4) describe demands of dressage using objective physiological and/or biomechanical measures from human athletes and/or how these demands are translated into superior performance. In total, 773 articles were identified. Title and abstract screening resulted in 155 articles that met the eligibility criteria, 97 were excluded during the full screening of articles, leaving 58 included articles (14 horse, 44 rider) involving 311 equine and 584 able-bodied human participants. Mean ± sd (%) quality scores were 63.5 ± 15.3 and 72.7 ± 14.7 for the equine and human articles respectively. Significant objective measures of horse performance (n = 12 articles) were grouped into themes and separated by gait/movement. A range of temporal variables that indicated superior performance were found in all gaits/movements. For the rider, n = 5 articles reported variables that identified significant differences in skill level, which included the postural position and ROM of the rider's pelvis, trunk, knee and head. The timing of rider pelvic and trunk motion in relation to the movement of the horse emerged as an important indicator of rider influence. As temporal variables in the horse are consistently linked to superior performance it could be surmised that better overall dressage performance requires minimal disruption from the rider whilst the horse maintains a specific gait/movement. Achieving the gait/movement in the first place depends upon the intrinsic characteristics of the horse, the level of training achieved and the ability of the rider to apply the correct aid. The information from this model will be used to develop an empirical study to test the relative strength of association between impairment and performance in able-bodied and Para Dressage riders.

Current therapy for the upper limb after stroke: a cross-sectional survey of UK therapists.

OBJECTIVES: To survey the reported content, frequency and duration of upper limb treatment provided by occupational and physiotherapists for people after stroke in the UK. DESIGN: A cross-sectional online survey was used. Description and analysis of the data were based on items from the Template for Intervention Description and Replication (Who, Where, What and How much). SETTING: The online survey was distributed via professional and social networks to UK-based therapists. PARTICIPANTS: Respondents were occupational or physiotherapists currently working clinically in the UK with people after stroke. Over the 6 week data collection period, 156 respondents opened the survey, and 154 completed it. Respondents comprised 85 physiotherapists and 69 occupational therapists. RESULTS: Respondents reported treating the upper limb a median of three times a week (range: 1 to 7) for a mean of 29 min (SD: 18). Most (n=110) stated this was supplemented by rehabilitation assistants, family and/or carers providing additional therapy a median of three times a week (range 1 to 7). Functional training was the most commonly reported treatment for people with mild and moderate upper limb deficits (>40%). There was much less consistency in treatments reported for people with severe upper limb deficits with less than 20% (n=28) reporting the same treatments. CONCLUSIONS: This study provides a contemporaneous description of reported therapy in the UK for people with upper limb deficits after stroke and a detailed template to inform standard therapy interventions in future research. Several evidence-based therapies were reported to be used by respondents (eg, constraint induced movement therapy), but others were not (eg, mental imagery). The findings also highlight that the current reported provision of upper limb therapy is markedly less than what is likely to be effective. This underlines an urgent need to configure and fund services to empower therapists to deliver greater amounts of evidence-based treatment for people with upper limb deficits after stroke.

Quality of life in adults with muscular dystrophy.

BACKGROUND: Muscle weakness is a defining characteristic of Muscular Dystrophy (MD); however, yet while speculated, objective measures of muscle weakness has not been reported in relation to quality of life in adults with MD. OBJECTIVES: 1) compare the self-reported QoL of adults with Duchenne MD (DMD), Beckers MD (BMD), Limb-Girdle MD (LGMD) and Fascioscapulohumeral MD (FSHD, and a non-MD (CTRL) group; 2) present and compare between groups measures of Impairment (Muscle Strength and Activities of Daily Living) and Perception (Fatigue, Pain and Self-Efficacy); and 3) identify associations between QoL domains and measures of Impairment and Perception (See above). METHODS: Seventy-Five males, including MD classifications DMD, BMD, LGMD, FSHD and CTRL, completed measures for QoL, Knee-Extension Maximal Voluntary Contraction (KEMVC), Fatigue, Pain, Self-Efficacy and Activities of Daily Living (ADL). RESULTS: QoL was lower across many domains in MD than CTRL. FSHD scored lower than DMD for mental wellbeing domains. KEMVC associated with Physical-Function domain for BMD. Pain, Self-Efficacy and ADLs associated with QoL domains, with Fatigue the most consistently associated. CONCLUSION: The present study identified differences between MD classifications within self-perceptions of mental-health. Muscle weakness is a defining feature of MD; however, it doesn't define QoL in adults with MD. A greater understanding of mental wellbeing, independence, and management of fatigue and pain, are required to improve QoL for adults with MD.

PULSE-I - Is rePetitive Upper Limb SEnsory stimulation early after stroke feasible and acceptable? A stratified single-blinded randomised controlled feasibility study.

BACKGROUND: Reduction in sensorimotor function of the upper limb is a common and persistent impairment after stroke, and less than half of stroke survivors recover even basic function of the upper limb after a year. Previous work in stroke has shown that repetitive sensory stimulation (RSS) of the upper limb may benefit motor function. As yet, there have been no investigations of RSS in the early-acute period despite this being the time window during which the neuroplastic processes underpinning sensorimotor recovery are likely to occur. METHODS: A single-blinded, stratified, randomised controlled feasibility study was undertaken at two NHS acute trusts to determine the recruitment rate, intervention adherence, and safety and acceptability of an RSS intervention in the early period after stroke. Participants were recruited within 2 weeks of index stroke. Stratified on arm function, they were randomised to receive either 45 min of daily RSS and usual care or usual care alone (UC) for 2 weeks. Changes from baseline on the primary outcome of the Action Research Arm Test (ARAT) to measurements taken by a blinded assessor were examined after completion of the intervention (2 weeks) and at 3 months from randomisation. RESULTS: Forty patients were recruited and randomised (RSS n = 23; UC n = 17) with a recruitment rate of 9.5% (40/417) of patients admitted with a stroke of which 52 (12.5%) were potentially eligible, with 10 declining to participate for various reasons. Participants found the RSS intervention acceptable and adherence was good. The intervention was safe and there were no serious adverse events. CONCLUSIONS: This study indicates that recruitment to a trial of RSS in the acute period after stroke is feasible. The intervention was well tolerated and appeared to provide additional benefit to usual care. In addition to a definitive trial of efficacy, further work is warranted to examine the effects of varying doses of RSS upon arm function and the mechanism by which RSS induces sensorimotor recovery in the acute period after stroke. TRIAL REGISTRATION: ISRCTN, registry no: ISRCTN17422343 ; IRAS Project ID: 215137. Registered on October 2016.

Frequency of reported pain in adult males with muscular dystrophy.

INTRODUCTION: The purpose of this study was to present and compare pain between adult males with Duchenne (DMD), Becker's (BMD), Limb-Girdle (LGMD) Facioscapulohumeral (FSHD) forms of Muscular Dystrophy (MD), and healthy controls (CTRL), using three different methods of assessment. METHODS: Pain was assessed using 1) a whole body visual analogue scale (VAS) of pain, 2) a generalised body map and 3) a localised body map. RESULTS: All types of MD reported more VAS pain than CTRL, with 97% of all MD participants reporting pain; however, no differences were reported between types of MD. The generalised body map approach identified more frequent pain in the shoulders of FSHD (93%) than other groups (13-43%), hips of DMD (87%) and LGMD (75%) than other groups (0-29%), and legs of all MD (64-78%) than CTRL (25%). The localised body map approach identified common areas of frequent pain across types of MD, posterior distal leg and distal back, as well as condition specific regions of frequent pain, for example posterior trapezius in FSHD, and anterior hip pain in DMD and LGMD. CONCLUSIONS: Using a single pain value (VAS), increased pain was reported by adults with MD compared to CTRL, with no clear differences between different MD groups, suggesting pain is symptomatic of MD. The use of the generalised body map approach, and to an even greater extent the localised body map approach, identified specific areas of frequent pain relevant to each individual condition. These results indicate that whist the commonly used generalised approach can be used to identify broad anatomical regions, the localised approach provides a more comprehensive understanding of pain, reflective of clinical assessment, and should be utilised in future research.

A Mixed Methods Small Pilot Study to Describe the Effects of Upper Limb Training Using a Virtual Reality Gaming System in People with Chronic Stroke.

Introduction. This small pilot study aimed to examine the feasibility of an upper limb rehabilitation system (the YouGrabber) in a community rehabilitation centre, qualitatively explore participant experiences, and describe changes after using it. Methods and Material. Chronic stroke participants attending a community rehabilitation centre in the UK were randomised to either a YouGrabber or a gym group and completed 18 training sessions over 12 weeks. The motor activity log, box and block, and fatigue severity score were administered by a blinded assessor before and after the intervention. Semistructured interviews were used to ascertain participants' views about using the YouGrabber. Results. Twelve participants (6 females) with chronic stroke were recruited. All adhered to the intervention. There were no adverse events, dropouts, or withdrawal. There were no significant differences between the YouGrabber and gym groups although there were significant within group improvements on the motor activity log (median change: 0.59, range: 0.2-1.25; p < 0.05) within the YouGrabber group. Participants reported that the YouGrabber was motivational but they expressed frustration with technical challenges. Conclusions. The YouGrabber appeared practical and may improve upper limb activities in people several months after stroke. Future work could examine cognition, cost effectiveness, and different training intensities.