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Purpose: Whilst strong evidence supports rehabilitation to improve outcomes post-stroke, there is limited evidence to guide rehabilitation in the most severely disabled group. In an era of evidence-based practice, the aim of the study was to understand what factors guide physiotherapists (PTs) and occupational therapists (OTs) to select particular interventions in the rehabilitation of physical function after severely disabling stroke., Material and Methods: An ethnographic study was undertaken over an 18-month period involving five London, UK stroke services. Seventy-nine primary participants (30 PTs, 22 OTs, and 27 stroke survivors) were recruited to the study. Over 400 h of observation, 52 semi-structured interviews were conducted. Study data were analysed through thematic analysis., Results: Key factors guiding therapist decision making were clinical expertise, professional role, stroke survivors' clinical presentation, therapist perspectives about stroke recovery, and clinical guidelines. Research evidence, stroke survivors' treatment preferences, organisational type, and pathway design were less influential factors. Therapy practice did not always address the physical needs of severely disabled stroke survivors., Conclusions: Multiple factors guided therapist decision making after severely disabling stroke. Alternative ways of therapist working should be considered to address the physical needs of severely disabled stroke survivors more fully.Implications for rehabilitationMultiple factors guide therapist decision making after severely disabling stroke, some of which result in the use of interventions that do not fully address stroke survivors' clinical needs.Therapists should critically reflect upon their personal beliefs and attitudes about severely disabling stroke to reduce potential sources of bias on decision making.Therapists should consider the timing and intensity of therapy delivery as well as their treatment approach to optimise outcomes after severely disabling stroke.

Care home residents with stroke have higher levels of disability and poorer access to health services than those living in their own homes. We undertook observations and semi-structured interviews (n = 28 participants) with managers, staff, residents who had experienced a stroke and their relatives in four homes in London, England, in 2018/2019. Thematic analysis revealed that residents' needs regarding valued activity and stroke-specific care and rehabilitation were not always being met. This resulted from an interplay of factors: staff's lack of recognition of stroke and its effects; gaps in skills; time pressures; and the prioritisation of residents' safety. To improve residential care provision and residents' quality of life, care commissioners, regulators and providers may need to re-examine how care homes balance safety and limits on staff time against residents' valued activity, alongside improving access to specialist healthcare treatment and support., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Objectives: This mixed-method process evaluation underpinned by normalisation process theory aims to measure fidelity to the intervention, understand the social and structural context in which the intervention is delivered and identify barriers and facilitators to intervention implementation., Setting: RETurn to work After stroKE (RETAKE) is a multicentre individual patient randomised controlled trial to determine whether Early Stroke Specialist Vocational Rehabilitation (ESSVR) plus usual care is a clinically and cost-effective therapy to facilitate return to work after stroke, compared with usual care alone. This protocol paper describes the embedded process evaluation., Participants and Outcome Measures: Intervention training for therapists will be observed and use of remote mentor support reviewed through documentary analysis. Fidelity will be assessed through participant questionnaires and analysis of therapy records, examining frequency, duration and content of ESSVR sessions. To understand the influence of social and structural contexts, the process evaluation will explore therapists' attitudes towards evidence-based practice, competency to deliver the intervention and evaluate potential sources of contamination. Longitudinal case studies incorporating non-participant observations will be conducted with a proportion of intervention and usual care participants. Semistructured interviews with stroke survivors, carers, occupational therapists, mentors, service managers and employers will explore their experiences as RETAKE participants. Analysis of qualitative data will draw on thematic and framework approaches. Quantitative data analysis will include regression models and descriptive statistics. Qualitative and quantitative data will be independently analysed by process evaluation and Clinical Trials Research Unit teams, respectively. Linked data, for example, fidelity and describing usual care will be synthesised by comparing and integrating quantitative descriptive data with the qualitative findings., Ethics and Dissemination: Approval obtained through the East Midlands-Nottingham 2 Research Ethics Committee (Ref: 18/EM/0019) and the National Health ServiceResearch Authority. Dissemination via journal publications, stroke conferences, social media and meetings with national Stroke clinical leads., Trial Registration Number: ISRCTN12464275., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Background: Stroke survivors living in care homes require high levels of support with everyday living. The aims of this study were to describe the survival, health status and care received by stroke survivors living in care homes at 1-year post-stroke, compared with those in their own homes., Methods: A total of 3,548 stroke survivors with a first ever stroke between 1998 and 2017 in the South London Stroke Register were identified for survival analysis. A total of 2,272 were included in the 1-year follow-up analysis. Cox regression and Kaplan-Meier plots were used to describe survival, stratified into four 5-year cohorts. Health status, medications and rehabilitation received at 1-year post-stroke were compared using descriptive statistics., Results: Over the 20-year period, survival improved for stroke survivors discharged to their own home (P < 0.001) but not for those discharged to care homes (P = 0.75). Care home residents were highly disabled (median Barthel index: 6/20, interquartile range: 2-10). Rates of secondary stroke prevention medications at 1-year follow-up increased over time for care home residents, including antiplatelets from 12.3 to 38.1%, although still lower than for those in their own homes (56.3%). Speech and language problems were common in the care home population (40.0%), but only 16% had received speech and language therapy., Conclusions: Rates of secondary stroke prevention prescribing increased over 20 years but remained lower in care home residents. The lower levels of rehabilitation received by stroke survivors in care homes, despite their higher levels of disability, suggest a gap in care and urgent need for restorative and/or preventative rehabilitation., (© The Author(s) 2021. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may dilute or even dissolve social hierarchies and challenge assumptions about practices and constraints in this care setting, thereby opening up possibilities for transformation that enhances the therapeutic value of the space for patients and care providers alike. By occasioning a liminal phase of possibility for change, the work of one co-design group explored in detail here suggests that, in this process, the sociomaterial interactions involving patients, family members, staff, and the physical space are refashioned and re-inscribed in transformed 'emplaced' relationships of care., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Little guidance exists regarding how best to upskill and support those delivering complex healthcare interventions to ensure robust trial outcomes and implementation fidelity. Mentoring was provided to occupational therapists (OTs) delivering a complex vocational rehabilitation (VR) intervention to stroke survivors. This study aimed to explore mentors' roles in supporting OTs with intervention delivery and fidelity, and to describe factors affecting the mentoring process and intervention delivery., Methods: Quantitative data (duration, mode and total time of mentoring support) was extracted from mentoring records and emails between mentors and OTs, alongside qualitative data on barriers and facilitators to intervention delivery. Semi-structured interviews with mentors (n = 6) and OTs (n = 19) explored experiences and perceptions of intervention training, delivery and the mentoring process. Mean total and monthly time spent mentoring were calculated per trial site. Qualitative data were analysed thematically., Results: Forty-one OTs across 16 sites were mentored between March 2018 and April 2020. Most mentoring was provided by phone or Microsoft Teams (range: 88.6-100%), with the remainder via email and SMS (Short Message Service) text messages. Mentors suggested strategies to enhance trial recruitment, improved OTs' understanding of- and adherence to trial processes, intervention delivery and fidelity, and facilitated independent problem-solving. Barriers to mentoring included OT non-attendance at mentoring sessions and mentors struggling to balance mentoring with clinical roles. Facilitators included support from the trial team and mentors having protected time for mentoring., Conclusions: Mentoring supported mentee OTs in various ways, but it remains unclear to what extent the OTS would have been able to deliver the intervention without mentoring support, or how this might have impacted fidelity. Successful implementation of mentoring alongside new complex interventions may increase the likelihood of intervention effectiveness being observed and sustained in real-life contexts. Further research is needed to investigate how mentors could be selected, upskilled, funded and mentoring provided to maximise impact. The clinical- and cost-effectiveness of mentoring as an implementation strategy and its impact on fidelity also requires testing in a future trial., Trial Registration: ISRCTN, ISRCTN12464275 . Registered on 13th March 2018., (© 2021. The Author(s).)

Background: Stroke patients are often inactive outside of structured therapy sessions - an enduring international challenge despite large scale organizational changes, national guidelines and performance targets. We examined whether experienced-based co-design (EBCD) - an improvement methodology - could address inactivity in stroke units., Aims: To evaluate the feasibility and impact of patients, carers, and staff co-designing and implementing improvements to increase supervised and independent therapeutic patient activity in stroke units and to compare use of full and accelerated EBCD cycles., Methods: Mixed-methods case comparison in four stroke units in England., Results: Interviews were held with 156 patients, staff, and carers in total; ethnographic observations for 364 hours, behavioral mapping of 68 patients, and self-report surveys from 179 patients, pre- and post-implementation of EBCD improvement cycles.Three priority areas emerged: (1) 'Space' (environment); (2) 'Activity opportunities' and (3) 'Communication'. More than 40 improvements were co-designed and implemented to address these priorities across participating units. Post-implementation interview and ethnographic observational data confirmed use of new social spaces and increased activity opportunities. However, staff interactions remained largely task-driven with limited focus on enabling patient activity. Behavioral mapping indicated some increases in social, cognitive, and physical activity post-implementation, but was variable across sites. Survey responses rates were low at 12-38% and inconclusive., Conclusion: It was feasible to implement EBCD in stroke units. This resulted in multiple improvements in stroke unit environments and increased activity opportunities but minimal change in recorded activity levels. There was no discernible difference in experience or outcome between full and accelerated EBCD; this methodology could be used across hospital stroke units to assist staff and other stakeholders to co-design and implement improvement plans.

Objective: To explore facilitators and barriers to using experience-based co-design (EBCD) and accelerated EBCD (AEBCD) in the development and implementation of interventions to increase activity opportunities for inpatient stroke survivors., Design: Mixed-methods process evaluation underpinned by normalisation process theory (NPT)., Setting: Four post-acute rehabilitation stroke units in England., Participants: Stroke survivors, family members, stroke unit staff, hospital managers, support staff and volunteers. Data informing our NPT analysis comprised: ethnographic observations, n=366 hours; semistructured interviews with 76 staff, 53 stroke survivors and 27 family members pre-EBCD/AEBCD implementation or post-EBCD/AEBCD implementation; and observation of 43 co-design meetings involving 23 stroke survivors, 21 family carers and 54 staff., Results: Former patients and families valued participation in EBCD/AEBCD perceiving they were equal partners in co-design. Staff engaged with EBCD/AEBCD, reporting it as a valuable improvement approach leading to increased activity opportunities. The structured EBCD/AEBCD approach was influential in enabling coherence and cognitive participation and legitimated staff involvement in the change process. Researcher facilitation of EBCD/AEBCD supported cognitive participation, collective action and reflexive monitoring; these were important in implementing and sustaining co-design activities. Observations and interviews post-EBCD/AEBCD cycles confirmed creation and use of new social spaces and increased activity opportunities in all units. EBCD/AEBCD facilitated engagement with wider hospital resources and local communities, further enhancing activity opportunities. However, outside of structured group activity, many individual staff-patient interactions remained task focused., Conclusions: EBCD/AEBCD facilitated the development and implementation of environmental changes and revisions to work routines which supported increased activity opportunities in stroke units providing post-acute and rehabilitation care. Former stroke patients and carers contributed to improvements. NPT's generative mechanisms were instrumental in analysis and interpretation of facilitators and barriers at the individual, group and organisational level, and can help inform future implementations of similar approaches., Competing Interests: Competing interests: GR teaches on the EBCD training courses run by ‘The Point of Care Foundation’ in London. GR is one of the originators of EBCD. The remaining authors declare no other competing interests., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Background: Return to work (RTW) is achieved by less than 50% of stroke survivors. The rising incidence of stroke among younger people, the UK economic forecast, and clinical drivers highlight the need for stroke survivors to receive support with RTW. However, evidence for this type of support is lacking. This randomised controlled trial (RCT) will investigate whether Early Stroke Specialist Vocational Rehabilitation (ESSVR) plus usual care (UC) (i.e. usual NHS rehabilitation) is more clinically and cost-effective for supporting post-stroke RTW, than UC alone., Methods: Seven hundred sixty stroke survivors and their carers will be recruited from approximately 20 NHS stroke services. A 5:4 allocation ratio will be employed to randomise participants to receive ESSVR plus UC, or UC alone. The individually tailored ESSVR intervention will commence within 12 weeks of stroke onset and be delivered for up to 12 months as necessary by trained RETAKE occupational therapists in the community, participants' homes or workplaces, and outpatient/inpatient therapy settings, via telephone, email, or SMS text message. Outcome data will be collected via self-report questionnaires administered by post or online at 3, 6, and 12 months follow-up. The primary outcome will be self-reported RTW and job retention at 12 months (minimum 2 h/week). Secondary outcomes will include mood, function, participation, health-related quality of life, confidence, intervention compliance, health and social care resource use, and mortality. An embedded economic evaluation will estimate cost-effectiveness and cost-utility analyses from National Health Service (NHS) and Personal Social Services (PSS) perspectives. An embedded process evaluation will employ a mixed methods approach to explore ESSVR implementation, contextual factors linked to outcome variation, and factors affecting NHS roll-out., Discussion: This article describes the protocol for a multi-centre RCT evaluating the clinical- and cost-effectiveness of an early vocational rehabilitation intervention aimed at supporting adults to return to work following a stroke. Evidence favouring the ESSVR intervention would support its roll-out in NHS settings., Trial Registration: ISRCTN, ISRCTN12464275 . Registered on 26 February 2018.

Introduction: Stroke survivors have complex health needs requiring long-term, integrated care. This study aimed to elicit generalists' and specialists' experience of stroke-related interprofessional communication, including perceived barriers and enablers., Design and Setting: Qualitative study involving generalist (primary care) and specialist services (acute and community) in England. Six focus groups (n = 48) were conducted., Method: Healthcare professionals were purposively selected and invited to participate. Audio-recordings were transcribed verbatim and analysed using Framework Analysis., Results: Four themes were identified: 1) Generalists and specialists have overlapping roles but are working in silos; 2) Referral decision-making process as influential to generalist-specialist communication; 3) Variable quality of communication; and 4) Improved dialogue between generalist and specialist services., Conclusions: Generalists and specialists recognise the need for better communication with each other. Current care is characterised by silo-based working that ignores the contribution of other sectors. Failure to bridge this communication gap will result in people with stroke continuing to experience unmet stroke needs and fragmented care., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2020 The Author(s).)

The UK National Health Service (NHS) is changing. Consecutive UK industrial strategies have supported the shift from an NHS that provides free-at-point-of-delivery healthcare to one that also facilitates research. Said to promote healthcare's triple aim of 'better health, better healthcare, and lower cost' (Wachter, 2016, 3), the digitisation of patient records is a core part in opening routine aspects of the health system to potential research. In this paper, we thematically analyse 11 policy documents and ask, how does the NHS discuss its decision to digitise patient records and what are the implications of such practices on the citizen? We document how (1) digitisation is presented as a collective endeavour for patients and NHS professionals, offering new possibilities for patients to participate in their own health and that of the population through research and, (2) digitisation contributes to the building of an efficient health system. Through this analysis we reflect on how discussions of digitisation present uncritically the potential of Electronic Health Records and big data analytics to improve care and generate wealth through research, and reconfigure patienthood, by placing research participation as a routine part of accessing NHS healthcare., (© 2020 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL (SHIL).)

Background: There is limited evidence about the effectiveness of rehabilitation in meeting the longer-term needs of stroke patients and their carers., Objective: To determine the clinical effectiveness and cost-effectiveness of an extended stroke rehabilitation service (EXTRAS)., Design: A pragmatic, observer-blind, parallel-group, multicentre randomised controlled trial with embedded health economic and process evaluations. Participants were randomised (1 : 1) to receive EXTRAS or usual care., Setting: Nineteen NHS study centres., Participants: Patients with a new stroke who received early supported discharge and their informal carers., Interventions: Five EXTRAS reviews provided by an early supported discharge team member between 1 and 18 months post early supported discharge, usually over the telephone. Reviewers assessed rehabilitation needs, with goal-setting and action-planning. Control treatment was usual care post early supported discharge., Main Outcome Measures: The primary outcome was performance in extended activities of daily living (Nottingham Extended Activities of Daily Living Scale) at 24 months post randomisation. Secondary outcomes at 12 and 24 months included patient mood (Hospital Anxiety and Depression Scale), health status (Oxford Handicap Scale), experience of services and adverse events. For carers, secondary outcomes included carers' strain (Caregiver Strain Index) and experience of services. Cost-effectiveness was estimated using resource utilisation costs (adaptation of the Client Service Receipt Inventory) and quality-adjusted life-years., Results: A total of 573 patients (EXTRAS, n  = 285; usual care, n  = 288) with 194 carers (EXTRAS, n  = 103; usual care, n  = 91) were randomised. Mean 24-month Nottingham Extended Activities of Daily Living Scale scores were 40.0 (standard deviation 18.1) for EXTRAS ( n  = 219) and 37.2 (standard deviation 18.5) for usual care ( n  = 231), giving an adjusted mean difference of 1.8 (95% confidence interval -0.7 to 4.2). The mean intervention group Hospital Anxiety and Depression Scale scores were not significantly different at 12 and 24 months. The intervention did not improve patient health status or carer strain. EXTRAS patients and carers reported greater satisfaction with some aspects of care. The mean cost of resource utilisation was lower in the intervention group: -£311 (95% confidence interval -£3292 to £2787), with a 68% chance of EXTRAS being cost-saving. EXTRAS was associated with 0.07 (95% confidence interval 0.01 to 0.12) additional quality-adjusted life-years. At current conventional thresholds of willingness to pay for a quality-adjusted life-year, there is a 90% chance that EXTRAS is cost-effective., Conclusions: EXTRAS did not improve stroke survivors' performance in extended activities of daily living but did improve their overall satisfaction with services. Given the impact on costs and quality-adjusted life-years, there is a high chance that EXTRAS could be considered cost-effective., Future Work: Further research is required to identify whether or not community-based interventions can improve performance of extended activities of daily living, and to understand the improvements in health-related quality of life and costs seen by provision of intermittent longer-term specialist review., Trial Registration: Current Controlled Trials ISRCTN45203373., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 24, No. 24. See the NIHR Journals Library website for further project information., Competing Interests: Gary A Ford declares personal fees from AstraZeneca (Cambridge, UK), Bayer AG (Leverkusen, Germany), Medtronic (Dublin, Ireland), Pfizer (New York, NY, USA), Pulse Therapeutics Euphrates Vascular (St Louis, MO, USA), Stryker Corporation (Kalamazoo, MI, USA) and Amgen (Thousand Oaks, CA, USA), and grants from Daiichi Sankyo (Tokyo, Japan), Medtronic and Pfizer outside the submitted work. Anne Forster declares grants from the National Institute for Health Research (NIHR) and The Stroke Association (London, UK) outside the submitted work. She reports membership of the Health Services and Delivery Research (HSDR) Researcher-led Prioritisation Committee. Denise Howel was a member of the NIHR Programme Grants for Applied Research panel (2016 to present) and NIHR HSDR Commissioning Board (2012–15) during this research project. Luke Vale was a member the NIHR Health Technology Assessment (HTA) Clinical Evaluation and Trials panel (2014–18) during this research project. Helen Rodgers declares fees from Bayer and that during this research project she was a member of the British Association of Stroke Physicians (president) (2014–17), NIHR HTA Clinical Evaluation and Trials Board (2010–14), Intercollegiate Stroke Working Party (2002 to present), National Stroke Programme (chairperson of rehabilitation and ongoing care working group) (2018 to present) Joint Stroke Medicine Committee Royal College of Physicians London (chairperson) (2018 to present) and Steering Group member VISTA (Virtual International Stroke Trials Archive) (2015 to present).

Drawing upon ethnographic observations of staff working within a research laboratory built around research and clinical data from twins, this article analyzes practices underlying the production and maintenance of a research database. While critical data studies have discussed different forms of 'data work' through which data are produced and turned into effective research resources, in this paper we foreground a specific form of data work, namely the affective and attentive relationships that humans build with data. Building on STS and feminist scholarship that highlights the importance of care in scientific work, we capture this specific form of data work as care. Treating data as relational entities, we discuss a set of caring practices that staff employ to produce and maintain their data, as well as the hierarchical and institutional arrangements within which these caring practices take place. We show that through acts of caring, that is, through affective and attentive engagements, researchers build long-term relationships with the data they help produce, and feel responsible for its flourishing and growth. At the same time, these practices of care - which we found to be gendered and valued differently from other practices within formal and informal reward systems - help to make data valuable for the institution. In this manner, care for data is an important practice of valuation and valorisation within data-intensive research that has so far received little explicit attention in scholarship and professional research practice.

Objective: To evaluate the effectiveness of rehabilitation interventions on physical function and immobility-related complications in severe stroke., Design: Systematic review of electronic databases (Medline, Excerpta Medica database, Cumulative Index to Nursing and Allied Health Literature, Allied and Complementary Medicine Database, Physiotherapy Evidence Database, Database of Research in Stroke, Cochrane Central Register of Controlled Trials) searched between January 1987 and November 2018., Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement guided the review. Randomised controlled trials comparing the effect of one type of rehabilitation intervention to another intervention, usual care or no intervention on physical function and immobility-related complications for patients with severe stroke were included. Studies that recruited participants with all levels of stroke severity were included only if subgroup analysis based on stroke severity was performed. Two reviewers screened search results, selected studies using predefined selection criteria, extracted data and assessed risk of bias for selected studies using piloted proformas. Marked heterogeneity prevented meta-analysis and a descriptive review was performed. The Grading of Recommendations Assessment, Development and Evaluation approach was used to assess evidence strength., Results: 28 studies (n=2677, mean age 72.7 years, 49.3% males) were included in the review. 24 studies were rated low or very low quality due to high risk of bias and small sample sizes. There was high-quality evidence that very early mobilisation (ie, mobilisation with 24 hours poststroke) and occupational therapy in care homes were no more effective than usual care. There was moderate quality evidence supporting short-term benefits of wrist and finger neuromuscular electrical stimulation in improving wrist extensor and grip strength, additional upper limb training on improving upper limb function and additional lower limb training on improving upper limb function, independence in activities of daily living, gait speed and gait independence., Conclusions: There is a paucity of high-quality evidence to support the use of rehabilitation interventions to improve physical function and reduce immobility-related complications after severe stroke. Future research investigating more commonly used rehabilitation interventions, particularly to reduce poststroke complications, is required., Prospero Registration Number: CRD42017077737., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Background and Purpose- Care homes provide care to many stroke survivors, yet little is known about changes in care home use over time. We aim to determine trends in discharge to care homes, to explore the characteristics of stroke survivors over time (1995-2018), and to identify the associations between these characteristics and discharge to care homes poststroke. Methods- Using data from the South London Stroke Register between 1995 and 2018, we estimated the proportions discharged to care homes and their characteristics over time, assessed by tests for trends. Multivariable logistic regression models were built to assess the associations between their characteristics and discharge destination. Results- Of 4172 stroke survivors, 484 (12%) were discharged to care homes. This proportion has decreased from 24% in 1995 to 2000 to 5% in 2013 to 2018. The mean age of those discharged to care homes has increased over time, from 73 to 75 ( P <0.001). Among stroke survivors discharged to a care home, the proportion with a prestroke Barthel Index <15 has also increased over time from 7% to 21% ( P =0.027), while the proportion with a 7-day poststroke Barthel Index <15 remains largely unchanged over time (93% in 1995-2000, 90% in 2013-2018). The characteristics most strongly associated with discharge to care homes were (odds ratio [95% CI]) age (1.05 [1.04-1.07] per year), stroke subtype (hemorrhagic; 0.64 [0.43-0.95]), stroke severity (Glasgow Coma Scale score, <13; 1.67 [1.19-2.35]), failed swallow test at admission (1.65 [1.20-2.25]), 7-day poststroke Barthel Index <15 (3.58 [2.20-6.03]), and a longer hospital stay (1.02 [1.02-1.03] per day). Conclusions- Over >20 years, there has been an 80% reduction in the proportion of stroke survivors discharged to care homes, influenced by changes in the demographics, disability, and stroke care in the underlying stroke population. In those moving to care homes, the level of poststroke disability remains high, requiring continued attention and investment.

In subsection "Genetics/genomics specialists" sentence beginning "Five…" cited reference 32 (Schwarze et al. 2018) and should have been reference 34 (Carroll et al. 2016). While in subsection "The value of genomic medicine" sentence beginning "V…" should have read "'Vassy et al…." Finally, in the same subsection, sentence beginning "Christensen and," should have read "Christensen and Green." The PDF and HTML versions of the Article have been modified accordingly.

Purpose: We sought to assess the readiness of the United Kingdom (UK) National Health Service to implement a Genomic Medicine Service. We conducted a systematic literature review to identify what is known about factors related to the implementation of genomic medicine in routine health care and to draw out the implications for the UK and other settings., Methods: Relevant studies were identified in Web of Science and PubMed from their date of inception to April 2018. The review included primary research studies using quantitative, qualitative, or mixed methods, and systematic reviews. A narrative synthesis was conducted., Results: Fifty-five studies met our inclusion criteria. The majority of studies reviewed were conducted in the United States. We identified four domains: (1) systems, (2) training and workforce needs, (3) professional attitudes and values, and (4) the role of patients and the public., Conclusion: Mainstreaming genomic medicine into routine clinical practice requires actions at each level of the health-care system. Our synthesis emphasized the organizational, social, and cultural implications of reforming practice, highlighting that demonstration of clinical utility and cost-effectiveness, attending to the compatibility of genomic medicine with clinical principles, and involving and engaging patients are key to successful implementation.

Background and Purpose- There is limited evidence to guide rehabilitation to meet the longer term needs of stroke survivors. The clinical effectiveness and cost-effectiveness of an extended stroke rehabilitation service (EXTRAS) provided following early supported discharge were determined. Methods- EXTRAS was a pragmatic parallel-group observer-blind randomized controlled trial involving 19 UK centers. Patients with stroke were individually randomized to receive EXTRAS or usual care at discharge from early supported discharge. Five EXTRAS reviews were provided by an early supported discharge team member between one and 18 months, usually by telephone. Reviews consisted of a semi-structured interview assessing progress, rehabilitation needs, and service provision, with goal setting and action planning. The primary outcome was performance in extended activities of daily living (Nottingham EADL Scale) at 24 months post-randomization. The Nottingham EADL Scale is scored 0 to 66, with higher scores indicating better performance in these activities. Cost-effectiveness was estimated using resource utilization costs and Quality Adjusted Life Years. Analyses were intention to treat. Results- Between January 9, 2013 and October 26, 2015, 573 participants were randomized (EXTRAS, n=285; usual care, n=288). Mean 24 month Nottingham EADL Scale scores were EXTRAS (n=219) 40.0 (SD 18.1) and usual care (n=231) 37.2 (SD 18.5) giving an adjusted mean difference of 1.8 (95% CI, -0.7 to 4.2). 1155/1338 (86%) of expected EXTRAS reviews were undertaken. Over 24 months, the mean cost of resource utilization was lower in the intervention group: -£311 (-$450 [95% CI, -£3292 to £2787; -$4764 to $4033]). EXTRAS provided more Quality Adjusted Life Years (0.07 [95% CI, 0.01 to 0.12]). At current conventional thresholds of willingness to pay (£20 000 [$28 940] per Quality Adjusted Life Years), there was a 90% chance that EXTRAS could be considered cost-effective. Conclusions- EXTRAS did not significantly improve stroke survivors' performance in extended activities of daily living. However, given the impact on costs and Quality Adjusted Life Years, EXTRAS may be an affordable addition to improve stroke care. Clinical Trial Registration- URL: www.isrctn.com. Unique identifier: ISRCTN45203373.

Background and Purpose: There is limited information on factors, trends, and outcomes in return to work at different time-points post-stroke; this study aims to identify these in a multi-ethnic urban population., Methods: Patterns of return to work were identified in individuals in paid work prior to first-ever stroke in the population-based South London Stroke Register (SLSR) between 1995 and 2014. Multivariable logistic regression examined associations between patient characteristics and return to work at 1 year (1 y), 5 years (5 y) and 10 years (10 y) post-stroke., Results: Among 5609 patients, 940 (17%) were working prior to their stroke, of whom 177 (19%) were working 3 months post-stroke, declining to 172 (18%) at 1 y, 113 (12%) at 5 y, and 27 (3%) at 10 y. Factors associated with return to work within 1 y, after logistic regression, included functional independence (BI ≥ 19; p  < 0.01) and shorter length of stay ( p  < 0.05). Younger age ( p  < 0.01) was associated with return to work at 5 y and 10 y post-stroke. Non-manual occupation ( p  < 0.05) was associated with return to work at 10 y post-stroke. Return to work within 1 y increased the likelihood of working at 5 y (OR: 13.68; 95% CI 5.03-37.24) and 10 y (9.07; 2.07-39.8). Of those who were independent at follow-up (BI ≥ 19), 48% were working at 1 y, 42% at 5 y, and 28% at 10 y. Lower rates of anxiety and depression and higher self-rated health were associated with return to work at 1 y ( p  < 0.01)., Conclusion: Although functionally independent stroke survivors are more likely to return to work long-term, a large proportion do not return to work despite functional independence. Return to work post-stroke is associated with improved long-term psychological outcomes and quality of life.

The National Institute for Health Research (NIHR) aims to improve national 'health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of 'clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of 'assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system., (© 2019 Foundation for the Sociology of Health & Illness.)

Objectives: Effective secondary stroke prevention strategies are suboptimally used. Novel development of interventions to enable healthcare professionals and stroke survivors to manage risk factors for stroke recurrence are required. We sought to engage key stakeholders in the design and evaluation of an intervention informed by a learning health system approach, to improve risk factor management and secondary prevention for stroke survivors with multimorbidity., Design: Qualitative, including focus groups, semistructured interviews and usability evaluations. Data was audio recorded, transcribed and coded thematically., Participants: Stroke survivors, carers, health and social care professionals, commissioners, policymakers and researchers., Setting: Stroke survivors were recruited from the South London Stroke Register; health and social care professionals through South London general practices and King's College London (KCL) networks; carers, commissioners, policymakers and researchers through KCL networks., Results: 53 stakeholders in total participated in focus groups, interviews and usability evaluations. Thirty-seven participated in focus groups and interviews, including stroke survivors and carers (n=11), health and social care professionals (n=16), commissioners and policymakers (n=6) and researchers (n=4). Sixteen participated in usability evaluations, including stroke survivors (n=8) and general practitioners (GPs; n=8). Eight themes informed the collaborative design of DOTT (Deciding On Treatments Together), a decision aid integrated with the electronic health record system, to be used in primary care during clinical consultations between the healthcare professional and stroke survivor. DOTT aims to facilitate shared decision-making on personalised treatments leading to improved treatment adherence and risk control. DOTT was found acceptable and usable among stroke survivors and GPs during a series of evaluations., Conclusions: Adopting a user-centred data-driven design approach informed an intervention that is acceptable to users and has the potential to improve patient outcomes. A future feasibility study and subsequent clinical trial will provide evidence of the effectiveness of DOTT in reducing risk of stroke recurrence., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Background: Clinical research is increasing across the United Kingdom. Within the context of a shortage of nurses, trusts have struggled to maintain research capacity. In order to meet staffing demands, trusts have increasingly turned to Clinical Research Practitioners (CRPs) to assist in the delivery of clinical research. Initially an ad hoc workforce, the CRP role is being formalised and professionalised. This study is a close examination of the clinical research delivery workforce at one research-intensive acute trust in the United Kingdom, with a focus on the emerging CRP staff group., Methods: The study was conducted in a large inner-city teaching hospital (acute trust) in London, United Kingdom. Data were collected between September and December 2017. Twenty-five staff were interviewed across 11 different directorates. Interviews were semi-structured with an overall focus on research staff backgrounds and roles, as well as their perceptions and experiences of careers in research. The data were managed using NVivo 11 software and analysed thematically., Results: CRPs are drawn from a wider pool of educational and employment backgrounds than their nurse colleagues, and actively seek out work in health research. CRPs receive on-the-job training to acquire the competencies that are necessary for them to carry out their work. The CRP role, which began in an ad hoc manner, has become regularised, yet remains to be well defined, which can be a source of frustration for CRPs and those who work with them., Conclusions: The professionalisation of the CRP workforce represents an opportunity for the health research system to employ research workers who possess a range of in-demand skills and to shore up research capacity in the context of the shortage of nurses.

Epigenetics, the study of the processes that control gene expression without a change in DNA sequence, highlights the importance of environmental factors in gene regulation. This paper maps the terrain of epigenetics and identifies four main research subfields: gene expression; molecular epigenetics; clinical epigenetics and epigenetic epidemiology. Within and across these fields, we analyse of what is conceptualised as environment and demonstrate the variable ways authors understand epigenetics environments. Then, following an analysis of the discursive strategies employed by epigenetics researchers, we demonstrate how authors portray the interactions between genes, epigenetics, and environment as relationships linking the outside (where the environment is located) with the inside (where the genes are located). We argue that authors assign specific roles to each actor: the environment as the active player initiating the relationship, the genes as recipients, and epigenetics as mediators between environment and genes. Framed as mediators, epigenetic markers can be understood as enablers of communication between environment and genome, capable of processing and organising signals so as to regulate the interactions between the actors of epigenetic relationships. This finding complicates the observation by social science scholars that the interactions between environment and genes can be understood through the concept of signal.

In this perspective paper, we explore the growing enthusiasm for "co-produced" research, focusing in particular on the United Kingdom's National Institute for Health Research's (NIHR) recent adoption of the term co-production. We consider how this interest in co-production is driven by concerns that patient and public involvement (PPI) in health research tends to be "tokenistic" and to reproduce power imbalances between researchers and lay contributors. We argue that these apparent implementation "barriers" or "inconsistencies" need to be understood in relation to the various elements that the institutionalisation of PPI brings together. We show how these elements are articulated in such a way that consumer, managerial, and performative logics and practices are dominant, resulting in limits being placed on the scope and forms of PPI, and the emergence of acts of recalcitrance and impression management. By considering the alternative discursive repertoires made available through co-production, we point to the possibilities co-production presents for moving beyond these dominant tendencies. We argue, however, that such possibilities need to be understood in relation to the constraints of the present. In doing so, we draw attention to the tenacity of the articulations that have historically constituted the institutionalisation of PPI., (Copyright © 2019 Paylor and McKevitt.)

Background: Incidence of paediatric stroke has been estimated to range from 1.2 to 13 per 100,000 children under 18 years of age. It is a significant cause of long-term morbidity in children with long-term impacts on physical, cognitive, psychological, and social outcomes. However, little is known about the experiences of parents caring for a child with stroke. Such information is needed to inform the development of child- and family-centred care., Methods: We conducted in-depth interviews with parents of children with stroke. Participants were purposively sampled from three regional specialist services in England, based on the age of the child at stroke onset and time since first stroke. Interviews used a topic guide and were audio recorded and transcribed in full. Thematic analysis was conducted to develop an account that reflected patients' experiences from their own perspectives., Results: Twelve parents participated with five children classified as having no to mild deficits and seven with moderate to severe deficits. Parents were concerned about the effects of stroke on the child's psychological, cognitive, and social well-being. Significant impacts on parents own well-being and on the family were reported. Although most experienced good quality acute care, meeting the child's needs after hospital discharge was problematic, with low levels of awareness of paediatric stroke among professionals and difficulties accessing relevant information and services. Meeting special education needs was variable. Parents were proactive in seeking to establish a sense of normality for the child and themselves., Conclusions: The findings illuminate a wider picture of paediatric stroke than indicated by clinical outcomes alone. Parents' experiences varied according to the child's needs but also family's situation and geographical location. Particular attention should be paid to co-ordinating services to meet multiple needs after discharge from hospital., (© 2018 John Wiley & Sons Ltd.)

Objectives: Occupational therapy, physiotherapy and speech and language therapy are central to rehabilitation after a stroke. The UK has introduced an audited performance target: that 45 min of each therapy should be provided to patients deemed appropriate. We sought to understand how this has influenced delivery of stroke unit therapy., Design: Ethnographic study, including observation and interviews. The theoretical framework drew on the work of Lipsky and Power, framing therapists as 'street level bureaucrats' in an 'audit society'., Setting: Stroke units in three English hospitals., Participants: Forty-three participants were interviewed, including patients, therapists and other staff., Results: There was wide variation in how therapy time was recorded and in decision-making regarding which patients were 'appropriate for therapy' or auditable. Therapists interpreted their roles differently in each stroke unit. Therapists doubted the validity of the audit results and did not believe their results reflected the quality of services they provided. Some assumed their audit results would inform commissioning decisions. Senior therapy leaders shaped priorities and practices in each therapy team. Patients were inactive outside therapy sessions. Patients differed regarding the quantity of therapy they felt they needed but consistently wanted to be more involved in decisions and treated as individuals., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Stroke rehabilitation aims to optimise function and reduce complications post-stroke. Rehabilitation to optimise physical function post-stroke has beneficial effects for survivors of mild to moderate stroke. However, little is known about the effectiveness of interventions to rehabilitate physical function or manage immobility-related complications for survivors of severe stroke. The systematic review aims to evaluate the effectiveness of rehabilitation interventions on physical function and immobility-related complications in severe stroke and identify topics for future research in this area., Methods: A systematic review of relevant electronic databases (MEDLINE, Embase, CINAHL, AMED, PEDro, DORIS and CENTRAL) between January 1987 and July 2017 will be undertaken to identify eligible published randomised controlled trials (RCTs) in any language. Ongoing RCTs will be identified by searching health-care trial registers (Stroke Trials Registry, ClinicalTrials.gov). Hand searches of identified study reference lists will also be performed. The PRISMA statement will be used to guide the systematic review. Two reviewers will screen search results, select studies using pre-defined selection criteria, extract data from and assess risk of bias for selected studies. Studies comparing the effect of one type of rehabilitation intervention to another or usual care on physical function and immobility-related complications for patients with severe stroke will be included. Studies may include participants with all levels of stroke severity but must provide sub-group analysis based on stroke severity. Studies will focus on any phase of the stroke rehabilitation pathway and will be grouped and analysed according to their timeframe post-stroke into acute and early sub-acute (up to 3 months post-stroke), early sub-acute to late sub-acute (from 3 to 6 months post-stroke) and chronic (greater than 6 months post-stroke). If sufficient studies demonstrate homogeneity, a meta-analysis will pool results of individual outcomes. The GRADE approach will be used to assess the evidence strength., Discussion: The results of this systematic review will summarise the strength of evidence for rehabilitation interventions used in the rehabilitation of physical function and immobility-related complications in severe stroke and identify gaps in evidence., Systematic Review Registration: The systematic review was registered with the International Prospective Register of Systematic Reviews (PROSPERO)-registration number CRD77737 .

Objectives: Cardiovascular disease (CVD) prevention guidelines recommend that patients' future CVD risk (as a percentage) is estimated and used to inform shared treatment decisions. We sought to understand the perspectives of patients with hypertension on their future risk of CVD., Design: Qualitative, semistructured interviews and thematic analysis., Participants: People with hypertension who had not experienced a cardiovascular event recruited from primary care., Setting: Participants were purposively sampled from two primary care practices in South London. Interviews were transcribed, and a thematic analysis was conducted., Results: 24 people participated; participants were diverse in age, sex, ethnicity and socioeconomic status. Younger working-aged people were under-represented. Contrasting with probabilistic risk, many participants understood future CVD as binary and unknowable. Roughly half of participants avoided contemplating future CVD risk; for some, lifestyle change and medication obviated the need to think about CVD risk. Some participants identified with one portion of the probability fraction ('I'd be one of those ones.'). Comparison with peers (typically partners, siblings and friends of a similar age, including both 'healthy' and 'unhealthy' people) was most frequently used to describe risk, both among those who engaged with and avoided risk discussion. This contrasts with current risk scores, which describe probabilities in people with similar risk factors; many participants did not identify with such a group, and hence did not find these probabilities meaningful, even where correctly understood., Conclusions: Risk as typically calculated and communicated (eg, the risk of '100 people like you') may not be meaningful for patients who do not identify with the denominator. Comparing an individual's risk with their peers could be more meaningful., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.)

Background: In 2010, Greater Manchester (GM) and London centralized acute stroke care services into a reduced number of hyperacute stroke units, with local stroke units providing on-going care nearer patients' homes., Objective: To explore the impact of centralized acute stroke care pathways on the experiences of patients., Design: Qualitative interview study. Thematic analysis was undertaken, using deductive and inductive approaches. Final data analysis explored themes related to five chronological phases of the centralized stroke care pathway., Setting and Participants: Recruitment from 3 hospitals in GM (15 stroke patients/8 family members) and 4 in London (21 stroke patients/9 family members)., Results: Participants were impressed with emergency services and initial reception at hospital: disquiet about travelling further than a local hospital was allayed by clear explanations. Participants knew who was treating them and were involved in decisions. Difficulties for families visiting hospitals a distance from home were raised. Repatriation to local hospitals was not always timely, but no detrimental effects were reported. Discharge to the community was viewed less positively., Discussion and Conclusions: Patients on the centralized acute stroke care pathways reported many positive aspects of care: the centralization of care pathways can offer patients a good experience. Disadvantages of travelling further were perceived to be outweighed by the opportunity to receive the best quality care. This study highlights the necessity for all staff on a centralized care pathway to provide clear and accessible information to patients, in order to maximize their experience of care., (© 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Background: Pediatric stroke has the potential for long term impact on the lives of children and their families. Child-centred intervention depends on understanding of needs from diagnosis onwards. However, little is known about the health and care support self-reported needs of this population., Aims: This study aimed to describe the nature and extent of needs (met and unmet) of pediatric stroke patients and their families and compare these with previously reported adult stroke needs., Methods: The questionnaire, adapted from a previously published adult stroke study, was conducted with parents of children who had an ischemic or haemorrhagic stroke between birth - 18 years, and young people with stroke now aged between 12 and 18 years. Participants were recruited from three tertiary pediatric stroke clinics in England. Levels and type of needs, and self-reported neurological impairment were captured. Comparisons of needs was reported descriptively and explored using Chi-square test., Results: Of 44 participants (39 parents, 5 young people), over two thirds reported at least one unmet need. Over half had difficulties in school-related activities, and over one-third in leisure activities and social relationships. Participants reported similar nature and extent of need when compared to previously reported adult stroke needs. Higher severity of neurological impairment was associated with higher number of needs., Conclusions: Children and young people and their parents have high levels of unmet need across a range of health domains in the months and years after pediatric stroke. This information supports the importance of a needs-based approach to maximising health and well-being., (Copyright © 2018 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.)

Background: Whilst pathways relating to the early stages of stroke care have become well established, strategies for longer-term care are less developed and longer-term outcomes remain poor for many stroke survivors. New Start, a complex intervention that includes needs identification, exploration of social networks and components of problem-solving and self-management, was designed to improve stroke survivors' quality of life by addressing unmet needs and increasing participation. It is delivered approximately 6 months post-stroke by trained staff (facilitators). We are currently undertaking a cluster randomised feasibility trial of the New Start intervention with an embedded process evaluation, which is an important component of the design and testing of complex interventions as it provides an understanding of how interventions are delivered and function in different settings., Methods/design: This mixed methods process evaluation will explore the degree to which New Start is implemented as intended, the impact of context on intervention delivery and the acceptability of the intervention for stroke survivors, their families and practitioners. It will include non-participant observation of facilitator training and intervention delivery. Interviews with stroke survivors, facilitators and other relevant staff (including administrators and managerial staff) will be undertaken. Qualitative data from interview transcripts, facilitator reflections and observational field notes will be analysed thematically alongside numerical data documenting intervention delivery collected as part of the trial., Discussion: This process evaluation will identify factors that aid and impede implementation of the New Start intervention and improve understanding of this novel approach to longer-term stroke care., Trial Registration: ISRCTN Registry, ISRCTN38920246 . Registered on 22 June 2016.

Background: Patient and public involvement is required where changes to care provided by the UK National Health Service are proposed. Yet involvement is characterized by ambiguity about its rationales, methods and impact., Aims: To understand how patients and carers were involved in major system changes (MSCs) to the delivery of acute stroke care in 2 English cities, and what kinds of effects involvement was thought to produce., Methods: Analysis of documents from both MSC projects, and retrospective in-depth interviews with 45 purposively selected individuals (providers, commissioners, third-sector employees) involved in the MSC., Results: Involvement was enacted through consultation exercises; lay membership of governance structures; and elicitation of patient perspectives. Interviewees' views of involvement in these MSCs varied, reflecting different views of involvement per se, and of implicit quality criteria. The value of involvement lay not in its contribution to acute service redesign but in its facilitation of the changes developed by professionals. We propose 3 conceptual categories-agitation management, verification and substantiation-to identify types of process through which involvement was seen to facilitate system change., Discussion: Involvement was seen to have strategic and intrinsic value. Its strategic value lay in facilitating the implementation of a model of care that aimed to deliver evidence-based care to all; its intrinsic value was in the idea of citizen participation in change processes as an end in its own right. The concept of value, rather than impact, may provide greater traction in analyses of contemporary involvement practices., (© 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Background: UK Hospital Trusts are charged with increasing patients' research awareness and willingness to take part in research. This includes implementing strategies to encourage patient-initiated enquiries about participation., Objectives: To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient-initiated recruitment., Setting: A medical outpatient clinic of a research-active hospital trust, serving an inner-city multi-ethnic population across two boroughs., Methods: Pre-intervention and post-intervention questionnaires were administered face-to-face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open-ended responses., Results: The response rates were 87% for the pre-intervention survey and 92% for the post-intervention survey. In the post-intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement "a little unclear," whilst one-third considered it "clear." Three-quarters of respondents perceived the statement to be "a little helpful." Only one person enquired about participating in clinical research having read the statement in the outpatient letter., Conclusion: The analysis suggests that simple, single-solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient-initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy)., (© 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Background: The economic implications of major system change are an important component of the decision to implement health service reconfigurations. Little is known about how best to report the results of economic evaluations of major system change to inform decision-makers. Reconfiguration of acute stroke care in two metropolitan areas in England, namely London and Greater Manchester (GM), was used to analyse the economic implications of two different implementation strategies for major system change., Methods: A decision analytic model was used to calculate difference-in-differences in costs and outcomes before and after the implementation of two major system change strategies in stroke care in London and GM. Values in the model were based on patient level data from Hospital Episode Statistics, linked mortality data from the Office of National Statistics and data from two national stroke audits. Results were presented as net monetary benefit (NMB) and using Programme Budgeting and Marginal Analysis (PBMA) to assess the costs and benefits of a hypothetical typical region in England with approximately 4000 strokes a year., Results: In London, after 90 days, there were nine fewer deaths per 1000 patients compared to the rest of England (95% CI -24 to 6) at an additional cost of £770,027 per 1000 stroke patients admitted. There were two additional deaths (95% CI -19 to 23) in GM, with a total costs saving of £156,118 per 1000 patients compared to the rest of England. At a £30,000 willingness to pay the NMB was higher in London and GM than the rest of England over the same time period. The results of the PBMA suggest that a GM style reconfiguration could result in a total greater health benefit to a region. Implementation costs were £136 per patient in London and £75 in GM., Conclusions: The implementation of major system change in acute stroke care may result in a net health benefit to a region, even one functioning within a fixed budget. The choice of what model of stroke reconfiguration to implement may depend on the relative importance of clinical versus cost outcomes.

Objective: To investigate how different lay and professional groups perceive and understand the use of routinely collected general practice patient data for research, public health, service evaluation and commissioning., Design, Method, Participants and Setting: We conducted a multimethod, qualitative study. This entailed participant observation of the design and delivery of a series of deliberative engagement events about a local patient database made of routine primary care data. We also completed semistructured interviews with key professionals involved in the database. Qualitative data were thematically analysed. The research took place in an inner city borough in England., Results: Of the community groups who participated in the six engagement events (111 individual citizens), five were health focused. It was difficult to recruit other types of organisations. Participants supported the uses of the database, but it was unclear how well they understood its scope and purpose. They had concerns about transparency, security and the potential misuse of data. Overall, they were more focused on the need for immediate investment in primary care capacity than data infrastructures to improve future health. The 10 interviewed professionals identified the purpose of the database in different ways, according to their interests. They emphasised the promise of the database as a resource in health research in its own right and in linking it to other datasets., Conclusions: Findings demonstrate positivity to the uses of this local database, but a disconnect between the long-term purposes of the database and participants' short-term priorities for healthcare quality. Varying understandings of the database and the potential for it to be used in multiple different ways in the future cement a need for systematic and routine public engagement to develop and maintain public awareness. Problems recruiting community groups signal a need to consider how we engage wider audiences more effectively., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucault's notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi-sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers., (© 2017 Foundation for the Sociology of Health & Illness.)

Stroke can lead to physical, mental and social long-term consequences, with the incidence of stroke increasing with age. However, there is a lack of evidence of how to improve long-term outcomes for people with stroke. Resilience, the ability to 'bounce back', flourish or thrive in the face of adversity improves mental health and quality of life in older adults. However, the role of resilience in adjustment after stroke has been little investigated. The purpose of this study is to report on the development and preliminary evaluation of a novel intervention to promote resilience after stroke. We applied the first two phases of the revised UK Medical Research Council (UKMRC) framework for the development and evaluation of complex interventions: intervention development (phase 1) and feasibility testing (phase 2). Methods involved reviewing existing evidence and theory, interviews with 22 older stroke survivors and 5 carers, and focus groups and interviews with 38 professionals to investigate their understandings of resilience and its role in adjustment after stroke. We used stakeholder consultation to co-design the intervention and returned to the literature to develop its theoretical foundations. We developed a 6-week group-based peer support intervention to promote resilience after stroke. Theoretical mechanisms of peer support targeted were social learning, meaning-making, helping others and social comparison. Preliminary evaluation with 11 older stroke survivors in a local community setting found that it was feasible to deliver the intervention, and acceptable to stroke survivors, peer facilitators, and professionals in stroke care and research. This study demonstrates the application of the revised UKMRC framework to systematically develop an empirically and theoretically robust intervention to promote resilience after stroke. A future randomised feasibility study is needed to determine whether a full trial is feasible with a larger sample and wider age range of people with stroke., (© 2016 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.)

Background: Dose-finding trials are essential to drug development as they establish recommended doses for later-phase testing. We aim to motivate wider use of model-based designs for dose finding, such as the continual reassessment method (CRM)., Methods: We carried out a literature review of dose-finding designs and conducted a survey to identify perceived barriers to their implementation., Results: We describe the benefits of model-based designs (flexibility, superior operating characteristics, extended scope), their current uptake, and existing resources. The most prominent barriers to implementation of a model-based design were lack of suitable training, chief investigators' preference for algorithm-based designs (e.g., 3+3), and limited resources for study design before funding. We use a real-world example to illustrate how these barriers can be overcome., Conclusions: There is overwhelming evidence for the benefits of CRM. Many leading pharmaceutical companies routinely implement model-based designs. Our analysis identified barriers for academic statisticians and clinical academics in mirroring the progress industry has made in trial design. Unified support from funders, regulators, and journal editors could result in more accurate doses for later-phase testing, and increase the efficiency and success of clinical drug development. We give recommendations for increasing the uptake of model-based designs for dose-finding trials in academia.

Background and aims Clinical predictive models for stroke recovery could offer the opportunity of targeted early intervention and more specific information for patients and carers. In this study, we developed and validated a patient-specific prognostic model for monitoring recovery after stroke and assessed its clinical utility. Methods Four hundred and ninety-five patients from the population-based South London Stroke Register were included in a substudy between 2002 and 2004. Activities of daily living were assessed using Barthel Index) at one, two, three, four, six, eight, 12, 26, and 52 weeks after stroke. Penalized linear mixed models were developed to predict patients' functional recovery trajectories. An external validation cohort included 1049 newly registered stroke patients between 2005 and 2011. Prediction errors on discrimination and calibration were assessed. The potential clinical utility was evaluated using prognostic accuracy measurements and decision curve analysis. Results Predictive recovery curves showed good accuracy, with root mean squared deviation of 3 Barthel Index points and a R 2 of 83% up to one year after stroke in the external cohort. The negative predictive values of the risk of poor recovery (Barthel Index <8) at three and 12 months were also excellent, 96% (95% CI [93.6-97.4]) and 93% [90.8-95.3], respectively, with a potential clinical utility measured by likelihood ratios (LR+:17 [10.8-26.8] at three months and LR+:11 [6.5-17.2] at 12 months). Decision curve analysis showed an increased clinical benefit, particularly at threshold probabilities of above 5% for predictive risk of poor outcomes. Conclusions A recovery curves tool seems to accurately predict progression of functional recovery in poststroke patients.

Background: Stroke, like many long-term conditions, tends to be managed in isolation of its associated risk factors and multimorbidity. With increasing access to clinical and research data there is the potential to combine data from a variety of sources to inform interventions to improve healthcare. A 'Learning Health System' (LHS) is an innovative model of care which transforms integrated data into knowledge to improve healthcare. The objective of this study is to develop a process of engaging stakeholders in the use of clinical and research data to co-produce potential solutions, informed by a LHS, to improve long-term care for stroke survivors with multimorbidity., Methods: We used a stakeholder engagement study design informed by co-production principles to engage stakeholders, including service users, carers, general practitioners and other health and social care professionals, service managers, commissioners of services, policy makers, third sector representatives and researchers. Over a 10 month period we used a range of methods including stakeholder group meetings, focus groups, nominal group techniques (priority setting and consensus building) and interviews. Qualitative data were recorded, transcribed and analysed thematically., Results: 37 participants took part in the study. The concept of how data might drive intervention development was difficult to convey and understand. The engagement process led to four priority areas for needs for data and information being identified by stakeholders: 1) improving continuity of care; 2) improving management of mental health consequences; 3) better access to health and social care; and 4) targeting multiple risk factors. These priorities informed preliminary design interventions. The final choice of intervention was agreed by consensus, informed by consideration of the gap in evidence and local service provision, and availability of robust data. This shaped a co-produced decision support tool to improve secondary prevention after stroke for further development., Conclusions: Stakeholder engagement to identify data-driven solutions is feasible but requires resources. While a number of potential interventions were identified, the final choice rested not just on stakeholder priorities but also on data availability. Further work is required to evaluate the impact and implementation of data-driven interventions for long-term stroke survivors.

Background: Previous studies have found low use of anticoagulation prior to stroke, in people with atrial fibrillation (AF). This study examined data on patients with AF-related stroke from a population-based stroke register, and sought to examine changes in management of AF prior to stroke, and reasons for suboptimal treatment, in those who were known to be at a high risk of stroke., Methods: The South London Stroke Register (SLSR) is an ongoing population-based register recording first-in-a-lifetime stroke. Trends in the prevalence of AF, and antithrombotic medication prescribed before the stroke, were investigated from 1995 to 2014. Multivariable logistic regression analyses were conducted to assess the factors associated with appropriate management., Results: Of the 5041 patients on the register, 816 (16.2%) were diagnosed with AF before their stroke. AF related stroke increased substantially among Black Carribean and Black African patients, comprising 5% of the overall cohort in 1995-1998, increasing to 25% by 2011-2014 (p<0.001). Anticoagulant prescription in AF patients at high-risk of stroke (CHADS2 score [> = 2]) increased from 9% (1995-1998) to 30% (2011-2014) (p<0.001). Antiplatelet prescription was more commonly prescribed throughout all time periods (43% to 64% of high-risk patients.) Elderly patients (>65) were significantly less likely to be prescribed an anticoagulant, with ethnicity, gender and deprivation showing no association with anticoagulation., Conclusions: Most AF-related strokes occurred in people who could have been predicted to be at high risk before their stroke, yet were not prescribed optimal preventative treatment. The elderly,despite being at highest stroke risk, were rarely prescribed anticoagulants.

Objective: Self-management programmes could support long-term needs after stroke and using methods integrated into rehabilitation is one option. To explore theoretical assumptions and possible mechanisms of implementation a process evaluation was delivered alongside a cluster trial which has demonstrated feasibility of an integrated self-management programme (Bridges SMP) in community-dwelling stroke survivors. This paper aims to show the extent to which experiences from stroke survivors receiving rehabilitation in control (usual care) and intervention (integrated self-management) sites reflected the differences in rehabilitation received and whether their understandings aligned with the self-management approach employed., Design: Semistructured qualitative interviews carried out as part of a process evaluation analysed thematically., Setting: Study was based in South London; all interviews were carried out in participants' home setting., Participants: 22 stroke participants recruited; 12 from integrated self-management sites and 10 from usual care sites., Results: All participants revealed shared appreciation of knowledge and support from therapists but subtle differences emerged between sites in respect to perceptions about responsibility, control and how previous experiences were used. Accounts depicted a variance regarding who had structured and planned their rehabilitation, with greater flexibility about content and involvement perceived by participants from the integrated self-management sites. They also provided accounts and experiences which aligned with principles of the intervention, such as self-discovery and problem-solving., Conclusions: The findings reflect our theoretical assumptions and possible mechanisms of implementation that rehabilitation with a focus on supporting self-management is reflected in accounts and understandings of stroke survivors. Taken together with our previous research this justifies evaluating the effectiveness of Bridges SMP in a larger sample to further contribute to an understanding of the functioning of the intervention, implementation, contextual factors and mechanisms of impact., Trial Registration Number: ISRCTN42534180; Post-results., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Objectives: Stroke is a sudden-onset condition with long-term consequences. Self-management could help address long-term consequences of stroke. Stroke survivors' and health professionals' views of self-management may vary, limiting the successful introduction of self-management strategies. This paper explores stroke survivors' and physiotherapists' views of self-management, focusing on what self-management means, and factors perceived to enable and hinder self-management after stroke, to draw out implications for policy, practice and future research., Design: Qualitative study using semistructured interviews and a thematic analysis approach., Setting: Stroke unit and community stroke-rehabilitation services in London, UK., Participants: 13 stroke survivors (8 men and 5 women; aged 53-89 years) admitted to a London stroke unit. 13 physiotherapists: 8 working in an inpatient stroke unit and 5 in community rehabilitation., Results: Key differences were evident in how self-management was understood between these groups. Stroke survivors were unfamiliar with the term self-management, but most could provide their own definition and relate to the term, and understood it as care of the self: 'doing things for yourself' and 'looking after yourself'. They did not recognise self-management as part of their care, but valued therapists as encouraging experts in supporting their recovery after stroke. Physiotherapists commonly understood self-management as a process in which stroke survivors were expected to take an active role in their rehabilitation and manage their recovery and health, with different understandings of self-management among physiotherapists shaped by the context in which they worked. They reported that individual, social and organisational factors enable and hinder self-management after stroke, with individual and organisational barriers particularly evident in the early stages., Conclusions: If self-management support approaches are to be used, further work is required to explore the language and strategies used by professionals to support self-management, and the barriers to supporting self-management at different time points after stroke., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Background: The global epidemiological shift of disease burden towards long-term conditions means understanding long-term outcomes of cardiovascular disease is increasingly important. More people are surviving stroke to experience its long-term consequences, but outcomes in people living more >10 years after stroke have not been described in detail., Methods: Data were collected for the population-based South London Stroke Register, with participants followed up annually until death. Outcomes were survival, disability, activity, cognitive impairment, quality of life, depression and anxiety., Findings: Of 2625 people having first-ever stroke, 262 (21%) survived to 15 years. By 15 years, 61% (95% CI 55% to 67%) of the survivors were male, with a median age of stroke onset of 58 years (IQR 48-66). 87% of the 15-year survivors were living at home and 33.8% (26.2% to 42.4%) had mild disability, 14.3% (9.2% to 21.4%) moderate disability and 15.0% (9.9% to 22.3%) severe disability. The prevalence of disability increased with time but 1 in 10 of the 15-year survivors had lived with moderate-severe disability since their stroke. At 15 years, the prevalence of cognitive impairment was 30.0% (19.5% to 43.1%), depression 39.1% (30.9% to 47.9%) and anxiety 34.9% (27.0% to 43.8%), and survivors reported greater loss of physical than mental quality of life., Conclusions: One in five people live at least 15 years after a stroke and poor functional, cognitive and psychological outcomes affect a substantial proportion of these long-term survivors. As the global population of individuals with cardiovascular long-term conditions grows, research and health services will need to increasingly focus on preventing and managing the long-term consequences of stroke., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: Gender inequity has persisted in academic medicine. Yet equity is vital for countries to achieve their full potential in terms of translational research and patient benefit. This study sought to understand how the gender equity programme, Athena SWAN, can be enabled and constrained by interactions between the programme and the context it is implemented into, and whether these interactions might produce unintended consequences., Design: Multimethod qualitative case studies using a realist evaluation approach., Setting: 5 departments from a university medical school hosting a Translational Research Organisation., Participants: 25 hours of observations of gender equality committee meetings, 16 in-depth interviews with Heads of Departments, Committee Leads and key personnel involved in the initiative. 4 focus groups with 15 postdoctoral researchers, lecturers and senior lecturers., Results: The implementation of Athena SWAN principles was reported to have created social space to address gender inequity and to have highlighted problematic practices to staff. However, a number of factors reduced the programme's potential to impact gender inequity. Gender inequity was reproduced in the programme's enactment as female staff was undertaking a disproportionate amount of Athena SWAN work, with potential negative impacts on individual women's career progression. Early career researchers experienced problems accessing Athena SWAN initiatives. Furthermore, the impact of the programme was perceived to be undermined by wider institutional practices, national policies and societal norms, which are beyond the programme's remit., Conclusions: Gender equity programmes have the potential to address inequity. However, paradoxically, they can also unintentionally reproduce and reinforce gender inequity through their enactment. Potential programme impacts may be undermined by barriers to staff availing of career development and training initiatives, and by wider institutional practices, national policies and societal norms., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Introduction: Translational research is central to international health policy, research and funding initiatives. Despite increasing use of the term, the translation of basic science discoveries into clinical practice is not straightforward. This systematic search and narrative synthesis aimed to examine factors enabling or hindering translational research from the perspective of basic and clinician scientists, a key stakeholder group in translational research, and to draw policy-relevant implications for organisations seeking to optimise translational research opportunities., Methods and Results: We searched SCOPUS and Web of Science from inception until April 2015 for papers reporting scientists' views of the factors they perceive as enabling or hindering the conduct of translational research. We screened 8,295 papers from electronic database searches and 20 papers from hand searches and citation tracking, identifying 26 studies of qualitative, quantitative or mixed method designs. We used a narrative synthesis approach and identified the following themes: 1) differing concepts of translational research 2) research processes as a barrier to translational research; 3) perceived cultural divide between research and clinical care; 4) interdisciplinary collaboration as enabling translation research, but dependent on the quality of prior and current social relationships; 5) translational research as entrepreneurial science. Across all five themes, factors enabling or hindering translational research were largely shaped by wider social, organisational, and structural factors., Conclusion: To optimise translational research, policy could consider refining translational research models to better reflect scientists' experiences, fostering greater collaboration and buy in from all types of scientists. Organisations could foster cultural change, ensuring that organisational practices and systems keep pace with the change in knowledge production brought about by the translational research agenda.

Background: Internationally, there has been increasing focus on creating health research systems. This article aims to investigate the challenges of implementing apparently simple strategies to support the development of a health research system. We focus on a case study of an English National Health Service Hospital Trust that sought to implement the national recommendation that health organisations should introduce a statement about research on all patient admission letters., Methods: We apply core concepts from complexity theory to the case study and undertake a documentary analysis of the email dialogue between staff involved in implementing this initiative., Results: The process of implementing a research statement in patient admission letters in one clinical service took 1 year and 21 days. The length of time needed was influenced firstly by adaptive self-organisation, underpinned by competing interests. Secondly, it was influenced by the relationship between systems, rather than simply being a product of issues within those systems. The relationship between the health system and the research system was weaker than might have been expected. Responsibilities were unclear, leading to confusion and delayed action., Conclusions: Conventional ways of thinking about organisations suggest that change happens when leaders and managers change the strategic vision, structure or procedures in an organisation and then persuade others to rationally implement the strategy. However, health research systems are complex adaptive systems characterised by high levels of unpredictability due to self-organisation and systemic interactions, which give rise to 'emergent' properties. We argue for the need to study how micro-processes of organisational dynamics may give rise to macro patterns of behaviour and strategic organisational direction and for the use of systems approaches to investigate the emergent properties of health research systems.