Using co-design methods to develop new personalised support for people living with Long Covid: The 'LISTEN' intervention.

INTRODUCTION: Many Covid-19 survivors are living with unresolved, relapsing and remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self-management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co-design framework to guide replication and evaluation. METHODS: We used the improvement methodology, Experience-Based Co-Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self-Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co-designed resources are also central to Bridges. Adults who self-identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co-design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. RESULTS: People with LC (n = 28), and HCPs (n = 9) supported co-design of a book (hard-copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co-design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co-design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. CONCLUSION: We have developed a new personalised support intervention, with core principles to be used in one-to-one sessions delivered by trained HCPs, with a new co-designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. PATIENT AND PUBLIC CONTRIBUTION: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co-design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co-authors of this paper.

An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid.

BACKGROUND: Around one in ten people who contract Covid-19 report ongoing symptoms or 'Long Covid'. Without any known interventions to cure the condition, forms of self-management are routinely prescribed by healthcare professionals and described by people with the condition. However, there is limited research exploring what strategies are used to navigate everyday life with Long Covid, and experiences that initiate development of these strategies. Our study aimed to explore the range and influence of self-generated strategies used by people with Long Covid to navigate everyday life within the context of their own condition. METHODS: Forming part of the Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) project, we conducted a qualitative study using narrative interviews with adults who were not hospitalised with Covid-19. Participants aged over 18 years, who self-identified with Long Covid, were recruited from England and Wales. Data were analysed with patient contributors using a reflexive thematic analysis. RESULTS: Eighteen participants (mean age = 44 years, SD = 13 years) took part in interviews held between December 2021 and February 2022. Themes were constructed which depicted 1) the landscape behind the Long Covid experience and 2) the everyday experience of participants' Long Covid. The everyday experience comprised a combination of physical, emotional, and social factors, forming three sub-themes: centrality of physical symptoms, navigating 'experts' and the 'true colour' of personal communities, and a rollercoaster of psychological ambiguity). The third theme, personal strategies to manage everyday life was constructed from participants' unique presentations and self-generated solutions to manage everyday life. This comprised five sub-themes: seeking reassurance and knowledge, developing greater self-awareness through monitoring, trial and error of 'safe' ideas, building in pleasure and comfort, and prioritising 'me'. CONCLUSIONS: Among this sample of adults with Long Covid, their experiences highlighted the unpredictable nature of the condition but also the use of creative and wide ranging self-generated strategies. The results offer people with Long Covid, and healthcare professionals supporting them, an overview of the collective evidence relating to individuals' self-management which can enable ways to live 'better' and regain some sense of identity whilst facing the impact of a debilitating, episodic condition. TRIAL REGISTRATION: LISTEN ISRCTN36407216.

Building Bridges between People with Stroke, Families, and Health Professionals: Development of a Blended Care Program for Self-Management.

Evidence-informed interventions for stroke self-management support can influence functional capability and social participation. People with stroke should be offered self-management support after hospital discharge. However, in Portugal, there are no known programs of this nature. This study aimed to develop a person-centered and tailored blended care program for post-stroke self-management, taking into account the existing evidence-informed interventions and the perspectives of Portuguese people with stroke, caregivers, and health professionals. An exploratory sequential mixed methods approach was used, including qualitative methods during stakeholder consultation (stage 1) and co-production (stage 2) and quantitative assessment during prototyping (stage 3). After ethical approval, recruitment occurred in three health units. Results from a literature search led to the adaptation of the Bridges Stroke Self-Management Program. In stage one, 47 participants were interviewed, with two themes emerging: (i) Personalized support and (ii) Building Bridges through small steps. In stage two, the ComVida program was developed, combining in-person and digital approaches, supported by a workbook and a mobile app. In stage three, 56 participants evaluated prototypes, demonstrating a strong level of quality. Understandability and actionability of the developed tools obtained high scores (91-100%). The app also showed good usability (A-grade) and high levels of recommendation (5 stars).

"A proof of life" through transition from hospital to home after a stroke in a Portuguese setting - a multi-perspective, longitudinal qualitative study.

PURPOSE: The impact of a stroke is particularly evident during the transition home, with reported unmet needs. However, little is known about post-stroke adaptation in Portugal. This study aimed to understand how Portuguese people with stroke and their informal carers/family adapt over time, and how health professionals support their adaptation. METHODS: A multi-perspective, longitudinal qualitative study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. A purposive sample of 24 participants (8 triads) participated. Thematic and narrative analysis strategies were used. RESULTS: Three themes were identified: Managing change over time; Balancing support over time; Changing priorities. These suggest the importance of time and gradual adjustment of health professionals' approach throughout the rehabilitation process tailored to people with stroke' and carers' needs. Both valued positive thoughts and support from others to adjust life goals and find a balance between a mutual/bidirectional support and time for themselves. CONCLUSIONS: Findings show that the manner in which changes after a stroke are approached may be positively transformed to provide strength. As a result of the deeper understanding gained from this study, health professionals may be better placed to acknowledge the needs of people with stroke and carers and find effective ways of supporting them.

Is a novel digital system for arm and hand rehabilitation suitable for stroke survivors? A qualitative process evaluation of OnTrack.

OBJECTIVES AND DESIGN: National guidelines emphasise the need to enhance arm and hand recovery poststroke. OnTrack is a 12-week package aiming to address this need. Feasibility was evaluated in a single-arm feasibility study (reported separately). This paper presents findings from a nested process evaluation. The objectives were to explore users' experiences of OnTrack and fidelity of delivery, in order to inform a definitive trial of effectiveness and future delivery. SETTING: Participants were interviewed in a range of settings in hospital, home or via telephone, at the end of their intervention cycle. Session observations for a selection of coaching sessions were carried out in person at home or remotely, post-COVID-19. PARTICIPANTS: Eleven participants who completed the intervention following a stroke were interviewed. Seven coaching sessions were observed. INTERVENTION: This process evaluation was part of a larger feasibility study of OnTrack, which involves setting movement targets and monitoring activity using a tracker on the wrist, motivational messaging via a Smartphone and self-management coaching. Preliminary analysis of data collected was conducted with a public and patient involvement group formed of stroke survivors. This informed changes in intervention delivery. RESULTS: Participants reported finding the OnTrack programme beneficial, with the coaching role seen as particularly important. Participants found activity tracking motivating, but some noted discrepancies between tracked movement and what they considered useful activity. Motivational messages were sometimes irritating. Most felt ready to sustain their own activity practice at the end of the programme. CONCLUSIONS: This process evaluation supported initial theoretical assumptions that OnTrack would enable activity practice through the use of remote monitoring. There was a strong emphasis on the coaching role as a mechanism of impact supporting the technological intervention. These findings will inform the next stages of delivery in a definitive trial. TRIAL REGISTRATION NUMBER: NCT03944486.

Experiences of acquired brain injury survivors participating in online and hybrid performance arts programmes: an ethnographic study.

BACKGROUND: Performance arts can benefit people with acquired brain injury (ABI). This study explored the online delivery during COVID-19 restrictions, of a performance art intervention through the experiences of participants, artists and facilitators. METHODS: Two community-based programmes were delivered. Online ethnographic observations and semi-structured interviews with participants, artists and facilitators were completed. RESULTS: The programmes benefited participants by addressing loneliness and isolation; building confidence through peer support; improving physical limitations through movement; improving communication through music and vocal work; and using poetry, visual arts, metaphor and performance to make sense of participants' experiences. Participants had mixed experiences of participation, but it was an acceptable alternative to in-person arts interventions for those who overcame digital challenges. CONCLUSIONS: ABI survivors can engage in online performance art programmes and find participation valuable for their health, well-being, and recovery. More work is needed to explore the generalisability of these findings, especially given digital poverty.

Exploring the issues that influence how people with rare neurological conditions engage in physical activity.

PURPOSE: People with rare neurological conditions (RNCs) struggle to achieve regular physical activity (PA). This study explored experiences of people with RNC engaging in PA, their carers, and health care professionals (HCPs) working with them. MATERIALS & METHODS: We developed three surveys: for individuals living with RNCs, their carers, and HCPs working with them. Themes from interviews with RNC charity representatives were used to co-design questions, together with people living with RNCs, their representatives, and an expert panel. Surveys were disseminated via charity mailing lists, social media accounts, and professional networks (HCPs). RESULTS: We received 436 responses (225 people with RNC, 94 carers, 117 HCPs). Most respondents with RNC achieved some level of regular PA but needed motivation to maintain it. Many felt they lacked knowledge on starting and staying active, with scarce resources and support. Most HCP respondents worked in specialist services, and overwhelmingly agreed that people with RNC should be physically active, while acknowledging lack of evidence and resources. CONCLUSIONS: We identified key barriers at environmental/organisational, interpersonal, and intrapersonal levels, highlighting a critical lack of support for people with RNC across UK health services. These factors can be targeted to increase engagement in PA.Implications for rehabilitationPeople living with rare neurological conditions experience barriers to engaging in physical activity, with some common to more prevalent neurological diseases, e.g. access and facilities, but some notable differences due to the rarity of the conditionFor people living with rare neurological conditions, and their carers, there is a lack of knowledge on safe and appropriate engagement in physical activityIncreasing the knowledge of health and exercise professionals may improve how they support people with rare neurological disease to engage with physical activity.Evidence based resources and recommendations for people living with rare neurological conditions, and professionals working with them, may facilitate engagement in physical activity.

Tumour stemness and poor clinical outcomes in haemochromatosis patients with hepatocellular carcinoma.

AIMS: Patients with haemochromatosis (HFE) are known to have an increased risk of developing hepatocellular carcinoma (HCC). Available data are conflicting on whether such patients have poorer prognosis, and there is lack of data regarding the biology of HFE-HCC. We compared the course of HFE-HCC with a matched non-HFE-HCC control group and examined tumour characteristics using immunohistochemistry. METHODS: In this tertiary care-based retrospective analysis, 12 patients with HFE and 34 patients with alcohol/non-alcoholic steatohepatitis who underwent initially successful curative HCC therapy with ablation or resection were identified from our registry. Time to tumour progression was compared. Resected liver tissue from a separate cohort of 11 matched patients with HFE-HCC and without HFE-HCC was assessed for the expression of progenitor and epithelial-mesenchymal transition markers using immunohistochemistry. RESULTS: The median follow-up was 24.39 and 24.28 months for patients with HFE-HCC and those without HFE-HCC, respectively (p>0.05). The mean time to progression was shorter in the HFE group compared with the non-HFE group (12.87 months vs 17.78 months; HR 3.322, p<0.05). Patients with HFE-HCC also progressed to more advanced disease by the end of follow-up (p<0.05). Immunohistochemical analysis of matched HFE-HCC and non-HFE-HCC explants demonstrated increased expression of the cancer stem cell markers EpCAM (epithelial cell adhesion molecule) and EpCAM/SALL4 (spalt-like transcription factor 4) coexpression in HFE-HCC specimens (p<0.05). There was a high frequency of combined tumour subtypes within the HFE cohort. CONCLUSIONS: This study demonstrates that the clinical course of patients with HFE-HCC is more aggressive and provides the first data indicating that their tumours have increased expression of progenitor markers. These findings suggest patients with HFE-HCC may need to be considered for transplant at an earlier stage.

Self-management from the perspective of people with stroke - An interview study.

OBJECTIVE: Self-management support can improve quality of life, mood, self-efficacy, and physical function following a stroke. Knowledge of how people with stroke understand and experience self-management in different contexts is crucial to developing effective self-management support. This study explored how people with stroke understand and practice self-management during the post-acute phase. METHOD: A descriptive study using qualitative content analysis to explore data from semistructured interviews RESULTS: Eighteen participants were interviewed. Most participants interpreted self-management as 'taking care of their business' and 'being independent". However, they encountered difficulties performing daily activities, for which they felt unprepared. Although interest in implementing self-management support increases, participants did not report receiving specific advice from healthcare professionals. CONCLUSION: People continue to feel unprepared to manage everyday activities after hospital discharge and must largely work things out for themselves. There is an overlooked opportunity to start the process of self-management support earlier in the stroke pathway, with healthcare professionals and people with stroke combining their skills, ideas and expertise. This would enable confidence to self-management to flourish rather than decrease during the transition from hospital to home. PRACTICAL IMPLICATIONS: Individual tailored self-management support could help people with stroke more successfully manage their daily lives post-stroke.

Butyrate limits human natural killer cell effector function.

The gut microbiota regulates chronic inflammation and has been implicated in the pathogenesis of a broad spectrum of disease including autoimmunity and cancer. Microbial short-chain fatty acids (SCFAs) e.g., butyrate have demonstrated immunomodulatory effects and are thought to be key mediators of the host-microbiome interaction. Here, we investigated the effect of butyrate on effector functions of blood derived human NK cells stimulated for 18 h with a combination of IL-12/IL-15, a potent mix of cytokines that drive NK cell activation. We show that butyrate has a strong anti-inflammatory effect on NK cells. NK cells cultured in the presence of butyrate expressed lower levels of activating receptors (TRAIL, NKp30, NKp44) and produced lower levels of cytokines (IFNγ, TNF-α, IL-22, granzyme B, granzyme A, perforin) in response to IL-12/IL-15. Butyrate restricted NK cell function by downregulation of mTORC1 activity, c-Myc mRNA expression and metabolism. Using a shotgun proteomic approach, we confirmed the effect of butyrate on NK cell cytokine signaling and metabolism and identified BRD2, MAT2A and EHD1 as downstream mediators of these effects. This insight into the immunomodulatory activity of butyrate on human NK cell function might help to develop new ways to limit NK cell function during chronic inflammation.

Effectiveness and cost-effectiveness of a personalised self-management intervention for living with long COVID: protocol for the LISTEN randomised controlled trial.

BACKGROUND: Individuals living with long COVID experience multiple, interacting and fluctuating symptoms which can have a dramatic impact on daily living. The aim of the Long Covid Personalised Self-managemenT support EvaluatioN (LISTEN) trial is to evaluate effects of the LISTEN co-designed self-management support intervention for non-hospitalised people living with long COVID on participation in routine activities, social participation, emotional well-being, quality of life, fatigue, and self-efficacy. Cost-effectiveness will also be evaluated, and a detailed process evaluation carried out to understand how LISTEN is implemented. METHODS: The study is a pragmatic randomised effectiveness and cost-effectiveness trial in which a total of 558 non-hospitalised people with long COVID will be randomised to either the LISTEN intervention or usual care. Recruitment strategies have been developed with input from the LISTEN Patient and Public Involvement and Engagement (PPIE) advisory group and a social enterprise, Diversity and Ability, to ensure inclusivity. Eligible participants can self-refer into the trial via a website or be referred by long COVID services. All participants complete a range of self-reported outcome measures, online, at baseline, 6 weeks, and 3 months post randomisation (the trial primary end point). Those randomised to the LISTEN intervention are offered up to six one-to-one sessions with LISTEN-trained intervention practitioners and given a co-designed digital resource and paper-based book. A detailed process evaluation will be conducted alongside the trial to inform implementation approaches should the LISTEN intervention be found effective and cost-effective. DISCUSSION: The LISTEN trial is evaluating a co-designed, personalised self-management support intervention (the LISTEN intervention) for non-hospitalised people living with long COVID. The design has incorporated extensive strategies to minimise participant burden and maximise access. Whilst the duration of follow-up is limited, all participants are approached to consent for long-term follow-up (subject to additional funding being secured). TRIAL REGISTRATION: LISTEN ISRCTN36407216. Registered on 27/01/2022.

Integrating an approach to personalised self-management support in stroke and neurorehabilitation service contexts: People1st - a quality improvement initiative.

PURPOSE: People living with stroke and neurological conditions access rehabilitation at different times but self-management is often viewed as what happens post-discharge. Personalised models that integrate self-management support within everyday care are now advocated but this may require practitioners to change their behaviour to adopt and sustain new ways of working. The People1st project evaluated integration of an existing Supported Self-Management programme ("Bridges") across varied stroke and neurorehabilitation service contexts. MATERIALS AND METHODS: Mixed-method evaluation of training for groups of healthcare practitioners across 24 UK National Health Service (NHS) Trusts, exploring how learning from Bridges was assimilated and enacted in practice, on an individual and collective basis. RESULTS: Staff growth in confidence and skill around supported self-management was demonstrated. Transformations to practice included changes to: the structure of, and language used in, patient interactions; induction/training processes to increase potential for sustainability; and sharing of successes. Bridges helped practitioners make changes that brought them closer to their professional ideals. Engaged leadership was considered important for successful integration. CONCLUSIONS: Bridges was successfully integrated within a wide range of stroke and neurorehabilitation service contexts, enabled by an approach in line with practitioners' values-based motivations. Further work is required to explore sustainability and impact on service users. Implications for rehabilitationPersonalised models of care and support for self-management are advocated for people living with stroke and neurological conditions; this requires practitioners to be supported to change behaviour and practices to adopt and sustain new ways of working.Staff from a wide variety of backgrounds in neurorehabilitation and stroke can learn collaboratively about self-management practices via the Bridges programme and can integrate those practices into their service contexts.Bridges can take practitioners closer to their professional ideals of caring and making a difference and empowers them to initiate change.Organisational commitment and engaged leadership are required to facilitate a culture of support for self-management in practice.

The risk of cardiovascular diseases after miscarriage, stillbirth, and induced abortion: a systematic review and meta-analysis.

Aims: Miscarriage and stillbirth have been included in cardiovascular disease (CVD) risk guidelines, however heterogeneity in exposures and outcomes and the absence of reviews assessing induced abortion, prevented comprehensive assessment. We aimed to perform a systematic review and meta-analysis of the risk of cardiovascular diseases for women with prior pregnancy loss (miscarriage, stillbirth, and induced abortion). Methods and results: Observational studies reporting risk of CVD, coronary heart disease (CHD), and stroke in women with pregnancy loss were selected after searching MEDLINE, Scopus, CINAHL, Web of Knowledge, and Cochrane Library (to January 2020). Data were extracted, and study quality were assessed using the Newcastle-Ottawa Scale. Pooled relative risk (RR) and 95% confidence intervals (CIs) were calculated using inverse variance weighted random-effects meta-analysis.Twenty-two studies involving 4 337 683 women were identified. Seven studies were good quality, seven were fair and eight were poor. Recurrent miscarriage was associated with a higher CHD risk (RR = 1.37, 95% CI: 1.12-1.66). One or more stillbirths was associated with a higher CVD (RR = 1.41, 95% CI: 1.09-1.82), CHD (RR = 1.51, 95% CI: 1.04-1.29), and stroke risk (RR = 1.33, 95% CI: 1.03-1.71). Recurrent stillbirth was associated with a higher CHD risk (RR = 1.28, 95% CI: 1.18-1.39). One or more abortions was associated with a higher CVD (RR = 1.04, 95% CI: 1.02-1.07), as was recurrent abortion (RR = 1.09, 95% CI: 1.05-1.13). Conclusion: Women with previous pregnancy loss are at a higher CVD, CHD, and stroke risk. Early identification and risk factor management is recommended. Further research is needed to understand CVD risk after abortion.

Defining, conceptualizing and evaluating pragmatic qualities of quantitative instruments measuring implementation determinants and outcomes: a scoping and critical review of the literature and recommendations for future research.

The pragmatic (i.e., practical) quality of quantitative implementation measures has received increased attention in the implementation science literature in recent years. Implementation measures that are judged to be pragmatic by implementation stakeholders are thought to be more likely to be applied in research and practice. Despite the need for pragmatic implementation measures, ambiguity and uncertainty regarding what constitutes a pragmatic measure remains. This study sought to identify and critically appraise the published literature to understand (i) how pragmatism is defined as a measurement construct/quality of implementation determinants and outcome instruments; (ii) how pragmatic qualities of instruments are evaluated; (iii) identify key gaps and limitations of the current evidence-base and (iv) identify recommendations for future research. We conducted a scoping review of the literature also employing methods of critical review. PubMed and PsycINFO databases, using the OVID interface, were searched for relevant articles published between January 2010 and September 2020. Articles that contained a definition and/or described characteristics of "pragmatism" as a measurement construct of quantitative implementation outcomes (as defined by Proctor's Implementation Outcomes taxonomy) and/or implementation determinants were eligible for inclusion. Nine articles met inclusion criteria. A degree of overlap in definitions and terms used to describe the pragmatic qualities of quantitative implementation determinant and outcome instruments were found. The most frequently cited descriptors of pragmatism were "not burdensome", "brief", "reliable", "valid" and "sensitive to change". 3 of the 9 included articles involved international implementation stakeholders in defining and conceptualizing pragmatism and employed specific methods to do so, including a systematic literature review, stakeholder interviews, concept mapping, and a Delphi process. All other articles defined pragmatism, with or without citing relevant literature. One article objectively assessed the pragmatic qualities, above and beyond the psychometric qualities, of implementation measures, using the Psychometric and Pragmatic Evidence Rating Scale (PAPERS). The evidence base within the implementation instrumentation literature on what pragmatism is and how it might be assessed is limited. Some of the research identified in the review provides a strong foundation to build upon, by testing its applicability in other settings (including healthcare areas and countries) and among a more diverse group of stakeholders. We discuss directions for further development of the concept of pragmatism relating to the measurement of implementation determinants and outcomes.

The need for pragmatic (i.e., practical) measures to evaluate implementation efforts has been repeatedly called for in the implementation science literature. This literature review focuses on understanding how pragmatism, as a measurement construct and quality of implementation measures, is defined, conceptualized and evaluated. We identified few articles (n = 9) that contribute to our understanding of how pragmatism is defined and evaluated. We found that the most frequently used terms to describe pragmatic qualities of implementation measures include "not burdensome", "brief", "reliable", "valid" and "sensitive to change". We identified one scale, the Psychometric and Pragmatic Evidence Rating Scale (PAPERS), developed to measure the pragmatic quality, as well as psychometric quality, of implementation measures. We identified several gaps and limitations of the current evidence-base and offer directions to further develop the concept and appraisal of pragmatism. Specifically, we recommend that future research focus on engaging and involving a wider diversity of implementation stakeholders in defining and conceptualizing pragmatism as well as subjecting existing pragmatic assessment measures to more rigorous and extensive evaluation.

Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol.

BACKGROUND: Long Covid is recognised as a complex condition characterised by multiple, interacting and fluctuating symptoms which impact everyday life in diverse ways. The extent of symptom clusters and variability supports interventions that can accommodate heterogeneity, such as personalised self-management support. This approach is also advocated by people living with long Covid and guidelines published by the UK's National Institute for Health and Care Excellence. Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) is one of 15 research projects funded by the UK's National Institute of Health Research long Covid research programme. LISTEN aims to work with people living with or recovered from long Covid to co-design self-management resources, and a training programme for rehabilitation practitioners to deliver personalised support. The intervention will focus on people not hospitalised for Covid. The protocol presented here details the co-design of the LISTEN intervention which, on completion, will be evaluated in a randomised controlled trial. METHODS: The study will utilise an Accelerated Experience-Based Co-Design approach, and involve 30 people from England and Wales with lived experience of long Covid, and 15 rehabilitation practitioners living with, or supporting people with, long Covid. Through online meetings, participants will share their stories of long Covid, their challenges and strategies to live better with or recover from long Covid, their priorities for self-management resources and the practitioner training andcreate, review and refine these resources and the training. Throughout, LISTEN will draw upon the UK standards of public involvement in research. DISCUSSION: If effective and cost-effective, the intervention will be available across the UK's National Health Service. The first of its kind, this study could make a difference to the lives of people with long Covid. To ensure impact, we have developed strategies to involve people from diverse backgrounds and mitigate potential barriers to involvement.

A Protocol to Understand the Implementation and Experiences of an Online Community-Based Performance Arts Programme Through and Beyond the COVID-19 Pandemic, Brain Waves.

Introduction: Individuals living with acquired brain injury experience numerous psychological, physical, and social challenges. Since the COVID-19 pandemic, many have experienced additional isolation, mental health issues and have had limited access to social and physical activities otherwise available in the community. Materials and Methods: Brain Waves is a 12-week online performance arts programme developed during the COVID-19 pandemic, for people with acquired brain injury (ABI). The research component of Brain Waves is a qualitative study, using Interpretative Phenomenological Analysis (IPA) and ethnographic methods (Observations and Interviews). The study will recruit two distinct populations: individuals living with acquired brain injury (including people who have experienced traumatic brain injury and stroke who are participating in the programme) and stakeholders (facilitators, involved in the delivery of Brain Waves). This paper presents the protocol for a project which aims to gain an understanding of the implementation and experiences of creating and participating in an online community-based performance arts programme.

The INSR/AKT/mTOR pathway regulates the pace of myogenesis in a syndecan-3-dependent manner.

Muscle stem cells (MuSCs) are indispensable for muscle regeneration. A multitude of extracellular stimuli direct MuSC fate decisions from quiescent progenitors to differentiated myocytes. The activity of these signals is modulated by coreceptors such as syndecan-3 (SDC3). We investigated the global landscape of SDC3-mediated regulation of myogenesis using a phosphoproteomics approach which revealed, with the precision level of individual phosphosites, the large-scale extent of SDC3-mediated regulation of signal transduction in MuSCs. We then focused on INSR/AKT/mTOR as a key pathway regulated by SDC3 during myogenesis and mechanistically dissected SDC3-mediated inhibition of insulin receptor signaling in MuSCs. SDC3 interacts with INSR ultimately limiting signal transduction via AKT/mTOR. Both knockdown of INSR and inhibition of AKT restore Sdc3-/- MuSC differentiation to wild type levels. Since SDC3 is rapidly downregulated at the onset of differentiation, our study suggests that SDC3 acts a timekeeper to restrain proliferating MuSC response and prevent premature differentiation.

What is the feasibility and patient acceptability of a digital system for arm and hand rehabilitation after stroke? A mixed-methods, single-arm feasibility study of the 'OnTrack' intervention for hospital and home use.

OBJECTIVES: Arm weakness is common after stroke; repetitive activity is critical for recovery but people struggle with knowing what to do, volume, and monitoring progress. We studied the feasibility and acceptability of OnTrack, a digital intervention supporting arm and hand rehabilitation in acute and home settings. DESIGN: A mixed-method, single-arm study evaluating the feasibility of OnTrack for hospital and home use. An independent process evaluation assessed the intervention's fidelity, dose and reach. Amendments to the protocol were necessary after COVID-19. SETTING: Acute stroke services and home settings in North West London. PARTICIPANTS: 12 adults with a stroke diagnosis <6 months previously (first or recurrent) requiring arm rehabilitation in hospital and/or home. INTERVENTION: 12 weeks using the OnTrack system comprising arm tracking and coaching support for self-management. PRIMARY AND SECONDARY OUTCOME MEASURES: Recruitment, retention and completion rates; compliance and adherence to the intervention; reasons for study decline/withdrawal.Intervention fidelity and acceptability, evaluated through an independent process evaluation.Patient measures including activity baseline, healthcare activation, arm function and impairment collected at baseline, week 7 and week 14 of participation to assess suitability for a randomised controlled trial (RCT). RESULTS: 181 individuals screened, 37 met eligibility criteria, 24 recruited (65%); of these, 15 (63%) were recruited before COVID-19, and 9 (37%) during. 12 completed the intervention (50%). Despite COVID-19 disruptions, recruitment, retention and completion were in line with prestudy expectations and acceptable for a definitive trial. Participants felt the study requirements were acceptable and the intervention usable. Fidelity of delivery was acceptable according to predetermined fidelity markers. Outcome measures collected helped determine sample size estimates and primary outcomes for an RCT. CONCLUSIONS: The intervention was found to be usable and acceptable by participants; study feasibility objectives were met and demonstrated that a definitive RCT would be viable and acceptable. TRIAL REGISTRATION NUMBER: NCT03944486.

How do stroke survivors and their caregivers manage post-stroke fatigue? A qualitative study.

OBJECTIVES: The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue. DESIGN: Qualitative, descriptive study. SETTING: Community telephone interviews. PARTICIPANTS: A purposive sample of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited. MAIN MEASURES: Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach. RESULTS: Most participants had found their own ways of coping and their personal strategies included acceptance of having fatigue; 'pacing' (spreading activities out and interspersing with rest periods); keeping a diary in order to plan activities and to identify 'trigger' activities which induced fatigue; talking to (and educating) others about having fatigue; using relaxation; and accessing professional advice and support. The burden placed on caregivers was considerable and they often had to oversee the post-stroke fatigue management strategies used. CONCLUSIONS: Post-stroke fatigue is managed in different ways and there was not one particular strategy that seemed effective for everyone. Most people in our study had had to devise their own ways of coping practically. Given the scale of this problem, which profoundly impacts the lives of both stroke survivors and caregivers, the management of post-stroke fatigue merits more attention and evaluation. However, this must be directly informed by those with lived experience.