Search

OBJECTIVE: This study investigated the delivery of an arts based intervention to stroke patients and sought users' and professionals' views of any perceived benefits. SETTING: The study was undertaken on the stroke rehabilitation ward of a London teaching hospital. DESIGN: Semi-structured interviews were carried out with 21 patients, 3 health care professionals and 5 reading service personnel. Observation sessions were carried out weekly for the 10-month duration of the project. Data were analysed using the Framework method. INTERVENTION: The reading service, run by Interact, a registered charity, aims to entertain, stimulate and engage patients. Readers are professional actors trained to work specifically with stroke patients. Interact provides a selection of reading materials or alternatively patients provide their own material. RESULTS: Participants' accounts suggested that the service met its aim of providing entertainment and stimulation. Additionally, there was some evidence that taking part in the reading service was associated with participants' emotional well being, the processes of adjusting to hospitalisation and to their engagement in rehabilitation therapies. Hospital staff acknowledged the service benefited patients with regard to spiritual, emotional/psychological needs. However they maintained that the service, as entertainment rather than therapy, was of minor importance. CONCLUSION: This arts based intervention was welcomed by patients and seemed to address some needs not met in the current configuration of care. These findings suggest that interventions such as the reading service point to ways in which it is possible to enhance the rehabilitation environment and perhaps facilitate better outcomes for stroke patients. [ABSTRACT FROM AUTHOR]

Abstract Background Significant changes in provision of clinical care within the English National Health Service (NHS) have been discussed in recent years, with proposals to concentrate specialist services in fewer centres. Stroke is a major public health issue, accounting for over 10% of deaths in England and Wales, and much disability among survivors. Variations have been highlighted in stroke care, with many patients not receiving evidence-based care. To address these concerns, stroke services in London and Greater Manchester were reorganised, although different models were implemented. This study will analyse processes involved in making significant changes to stroke care services over a short time period, and the factors influencing these processes. We will examine whether the changes have delivered improvements in quality of care and patient outcomes; and, in light of this, whether the significant extra financial investment represented good value for money. Methods/design This study brings together quantitative data on ‘what works and at what cost?’ with qualitative data on ‘understanding implementation and sustainability’ to understand major system change in two large conurbations in England. Data on processes of care and their outcomes (e.g. morbidity, mortality, and cost) will be analysed to evidence services’ performance before and after reconfiguration. The evaluation draws on theories related to the dissemination and sustainability of innovations and the ‘social matrix’ underlying processes of innovation. We will conduct a series of case studies based on stakeholder interviews and documentary analysis. These will identify drivers for change, how the reconfigurations were governed, developed, and implemented, and how they influenced service quality. Discussion The research faces challenges due to: the different timings of the reconfigurations; the retrospective nature of the evaluation; and the current organisational turbulence in the English NHS. However, these issues reflect the realities of major systems change and its evaluation. The methods applied in the study have been selected to account for and learn from these complexities, and will provide useful lessons for future reconfigurations, both in stroke care and other specialties.

Objective: Stroke survivors are at high risk of stroke recurrence yet current strategies to reduce recurrence risk are sub-optimal. The UK Medical Research Council (MRC) have proposed a framework for developing and evaluating complex interventions, such as community management of stroke secondary prevention. The Framework outlines a five-phased approach from theory through to implementation of effective interventions. This paper reports Phases I-III of the development of a novel intervention to improve risk factor management after stroke.Methods: The pre-clinical/theoretical phase entailed reviewing the literature and undertaking quantitative and qualitative studies to identify current practices and barriers to secondary prevention. In Phase I (modelling), findings were used to design an intervention with the potential to overcome barriers to effective stroke secondary prevention management. The feasibility of delivering the intervention and its acceptability were tested in the Phase II exploratory trial involving 25 stroke survivors and their general practitioners.Results: This led to the development of the definitive risk factor management intervention. This comprises multiple components and involves using an on-going population stroke register to target patients, carers and health care professionals with tailored secondary prevention advice. Clinical, socio-demographic and service use data collected by the stroke register are transformed to provide an individualised secondary prevention package for patients, carers and health care professionals at three time points: within 10 weeks, 3 and 6 months post-stroke.Conclusion: The intervention is currently being evaluated in a randomised controlled trial. Further research is needed to test generalisability to other aspects of stroke management and for other chronic diseases.Practice Implications: The MRC Framework for complex interventions provides a structured approach to guide the development of novel interventions in public health. Implications for practice in stroke secondary prevention will emerge when the results of our randomised controlled trial are published. [ABSTRACT FROM AUTHOR]

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.

Functional pituitary adenomas (FPAs) are associated with hormonal hypersecretion resulting in systemic endocrinopathies and increased mortality. The heterogenous composition of the FPA population has made modeling predictive factors of postoperative disease remission a challenge. Here, we aim to define a novel scoring system predictive of disease remission following transsphenoidal surgery (TSS) for FPAs and validate our process using supervised machine learning (SML). 392 patients with FPAs treated at one of the three Mayo Clinic campuses were retrospectively reviewed. Variables found significant on multivariate analysis were incorporated into our novel Pit-SCHEME score. The Pit-SCHEME score with a cut-off value ≥ 6 achieved a sensitivity of 86% and positive likelihood ratio of 2.88. In SML models, without the Pit-SCHEME score, the k-nearest neighbor (KNN) model achieved the highest accuracy at 75.6%. An increase in model sensitivity was achieved with inclusion of the Pit-SCHEME score with the linear discriminant analysis (LDA) model achieving an accuracy of 86.9%, which suggests the Pit-SCHEME score is the variable of most importance for prediction of postoperative disease remission. Ultimately, these results support the potential clinical utility of the Pit-SCHEME score and its prospective future for aiding in the perioperative decision making in patients with FPAs., (© 2023. Springer Nature Limited.)

Purpose: Meningiomas are the most common primary brain tumor and represent 35% of all intracranial neoplasms. However, in the early post-operative period approximate 3-5% of patients experience an acute symptomatic seizure. Establishing risk factors for postoperative seizures will identify those patients without preoperative seizures at greatest risk of postoperative seizures and may guide antiseizure medications (ASMs) management., Methods: Adult seizure naïve patients who underwent primary resection of a World Health Organization (WHO) Grade 1-3 meningioma at the three Mayo Clinic Campuses between 2012-2022 were retrospectively reviewed. Multivariate regression analyses were used to identify radiological, surgical, and management features with the development of new-onset seizures in patients undergoing meningioma resection., Results: Of 113 seizure naïve patients undergoing meningioma resection 11 (9.7%) experienced a new-onset post-operative seizure. Tumor volume ≥ 25 cm 3 (Odds Ratio (OR) 5.223, 95% Confidence Interval (CI) 1.546 - 17.650, p = 0.008) and cerebral convexity meningiomas (OR 4.742, 95% CI 1.255 - 14.336, p = 0.016) were most associated with new onset postoperative seizures in multivariate analysis. ASMs and corticosteroid therapies did not display a significant difference among those with and without a new onset postoperative seizure., Conclusion: In the current study, a larger tumor volume (≥ 25 cm 3 ) and/or convexity meningiomas predicted the development of new onset post-operative seizures. Those who present with these factors should be counseled for their increased risk of new onset post-operative seizures and may benefit from prophylactic ASMs therapy., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Austria, part of Springer Nature.)

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: Levels of self-reported health do not always correlate with levels of physical disability in stroke survivors. We aimed to explore what underlies the difference between subjective self-reported health and objectively measured disability among stroke survivors., Methods: Face to face semi-structured interviews were conducted with stroke survivors recruited from a stroke clinic or rehabilitation ward in the UK. Fifteen stroke survivors purposively sampled from the clinic who had discordant self-rated health and levels of disability i.e. reported health as 'excellent' or 'good' despite significant physical disability (eight), or as 'fair' or 'poor' despite minimal disability (seven) were compared to each other, and to a control group of 13 stroke survivors with concordant self-rated health and disability levels. Interviews were conducted 4 to 6 months after stroke and data analysed using the constant comparative method informed by Albrecht and Devlieger's concept of 'disability paradox'., Results: Individuals with 'excellent' or 'good' self-rated health reported a sense of self-reliance and control over their bodies, focussed on their physical rehabilitation and lifestyle changes and reported few bodily and post-stroke symptoms regardless of level of disability. They also frequently described a positive affect and optimism towards recovery. Some, especially those with 'good' self-rated health and significant disability also found meaning from their stroke, reporting a spiritual outlook including practicing daily gratitude and acceptance of limitations. Individuals with minimal disability reporting 'fair' or 'poor' self-rated health on the other hand frequently referred to their post-stroke physical symptoms and comorbidities and indicated anxiety about future recovery. These differences in psychological outlook clustered with differences in perception of relational and social context including support offered by family and healthcare professionals., Conclusions: The disability paradox may be illuminated by patterns of individual attributes and relational dynamics observed among stroke survivors. Harnessing these wider understandings can inform new models of post-stroke care for evaluation., (© 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.

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.

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.

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.)