An individually randomised controlled multi-centre pragmatic trial with embedded economic and process evaluations of early vocational rehabilitation compared with usual care for stroke survivors: study protocol for the RETurn to work After stroKE (RETAKE) trial.

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.

An extended stroke rehabilitation service for people who have had a stroke: the EXTRAS RCT.

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.

Early supported discharge enables stroke patients with mild or moderate disability to be discharged earlier than usual from hospital to continue rehabilitation at home. Randomised controlled trials have demonstrated that early supported discharge leads to increased independence for stroke survivors, and that early supported discharge is cost-effective. Early supported discharge is usually provided for up to 6 weeks and patients with ongoing physical, psychological or social needs are then referred to other services. In the UK, provision of longer-term rehabilitation is often limited. Lack of research evidence has meant that service development in this aspect of stroke care has lagged behind service development for acute care. This clinical trial evaluated an extended stroke rehabilitation service (EXTRAS) that started when early supported discharge ended. Stroke survivors and their carers were randomly assigned to receive EXTRAS or usual NHS care. EXTRAS involved five rehabilitation reviews conducted over 18 months by an early supported discharge team member, usually over the telephone. Each review consisted of an assessment of current needs, goal-setting and action-planning, and sought to improve patients' abilities and confidence to undertake extended activities of daily living (mobility, kitchen and domestic tasks, and leisure activities). There were no specific assessments or actions for carers but it was important to evaluate the impact that the new service had on carers. Patients and carers were followed up for 2 years and information was collected about their activities, mood, quality of life and services received. EXTRAS did not improve stroke survivors' performance in extended activities of daily living. However, patients who received EXTRAS reported less anxiety and less depression than those who received usual care, and patients and carers were more satisfied with some aspects of their care. EXTRAS did not improve carers' quality of life or stress. Health economic analyses suggest that EXTRAS improved patients' quality of life and may be good value for money. Further research is needed to identify other treatments to address the longer-term consequences of stroke.

Evaluation of an Extended Stroke Rehabilitation Service (EXTRAS): A Randomized Controlled Trial and Economic Analysis.

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.

Collaborative design of a decision aid for stroke survivors with multimorbidity: a qualitative study in the UK engaging key stakeholders.

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.

Delivering genomic medicine in the United Kingdom National Health Service: a systematic review and narrative synthesis.

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.

Impact and sustainability of centralising acute stroke services in English metropolitan areas: retrospective analysis of hospital episode statistics and stroke national audit data.

OBJECTIVES: To investigate whether further centralisation of acute stroke services in Greater Manchester in 2015 was associated with changes in outcomes and whether the effects of centralisation of acute stroke services in London in 2010 were sustained. DESIGN: Retrospective analyses of patient level data from the Hospital Episode Statistics (HES) database linked to mortality data from the Office for National Statistics, and the Sentinel Stroke National Audit Programme (SSNAP). SETTING: Acute stroke services in Greater Manchester and London, England. PARTICIPANTS: 509 182 stroke patients in HES living in urban areas admitted between January 2008 and March 2016; 218 120 stroke patients in SSNAP between April 2013 and March 2016. INTERVENTIONS: Hub and spoke models for acute stroke care. MAIN OUTCOME MEASURES: Mortality at 90 days after hospital admission; length of acute hospital stay; treatment in a hyperacute stroke unit; 19 evidence based clinical interventions. RESULTS: In Greater Manchester, borderline evidence suggested that risk adjusted mortality at 90 days declined overall; a significant decline in mortality was seen among patients treated at a hyperacute stroke unit (difference-in-differences -1.8% (95% confidence interval -3.4 to -0.2)), indicating 69 fewer deaths per year. A significant decline was seen in risk adjusted length of acute hospital stay overall (-1.5 (-2.5 to -0.4) days; P<0.01), indicating 6750 fewer bed days a year. The number of patients treated in a hyperacute stroke unit increased from 39% in 2010-12 to 86% in 2015/16. In London, the 90 day mortality rate was sustained (P>0.05), length of hospital stay declined (P<0.01), and more than 90% of patients were treated in a hyperacute stroke unit. Achievement of evidence based clinical interventions generally remained constant or improved in both areas. CONCLUSIONS: Centralised models of acute stroke care, in which all stroke patients receive hyperacute care, can reduce mortality and length of acute hospital stay and improve provision of evidence based clinical interventions. Effects can be sustained over time.

Seeking normality: Parents' experiences of childhood stroke.

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.

The potential role of cost-utility analysis in the decision to implement major system change in acute stroke services in metropolitan areas in England.

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.

Embracing model-based designs for dose-finding trials.

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.

Trends in the prevalence and management of pre-stroke atrial fibrillation, the South London Stroke Register, 1995-2014.

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.

Gender equity programmes in academic medicine: a realist evaluation approach to Athena SWAN processes.

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.

The effects of socioeconomic status on stroke risk and outcomes.

The latest evidence on socioeconomic status and stroke shows that stroke not only disproportionately affects low-income and middle-income countries, but also socioeconomically deprived populations within high-income countries. These disparities are reflected not only in risk of stroke but also in short-term and long-term outcomes after stroke. Increased average levels of conventional risk factors (eg, hypertension, hyperlipidaemia, excessive alcohol intake, smoking, obesity, and sedentary lifestyle) in populations with low socioeconomic status account for about half of these effects. In many countries, evidence shows that people with lower socioeconomic status are less likely to receive good-quality acute hospital and rehabilitation care than people with higher socioeconomic status. For clinical practice, better implementation of well established treatments, effective management of risk factors, and equity of access to high-quality acute stroke care and rehabilitation will probably reduce inequality substantially. Overcoming barriers and adapting evidence-based interventions to different countries and health-care settings remains a research priority.

Barriers and opportunities for enhancing patient recruitment and retention in clinical research: findings from an interview study in an NHS academic health science centre.

BACKGROUND: In the UK, the recruitment of patients into clinical research is a national health research and development policy priority. There has been limited investigation of how national level factors operate as barriers or facilitators to recruitment work, particularly from the perspective of staff undertaking patient recruitment work. The aim of this study is to identify and examine staff views of the key organisational barriers and facilitators to patient recruitment work in one clinical research group located in an NHS Academic Health Science Centre. METHODS: A qualitative study utilizing in-depth, one-to-one semi-structured interviews with 11 purposively selected staff with particular responsibilities to recruit and retain patients as clinical research subjects. Thematic analysis classified interview data by recurring themes, concepts, and emergent categories for the purposes of establishing explanatory accounts. RESULTS: The findings highlight four key factors that staff perceived to be most significant for the successful recruitment and retention of patients in research and identify how staff located these factors within patients, studies, the research centre, the trust, and beyond the trust. Firstly, competition for research participants at an organisational and national level was perceived to undermine recruitment success. Secondly, the tension between clinical and clinical research workloads was seen to interrupt patient recruitment into studies, despite national funding arrangements to manage excess treatment costs. Thirdly, staff perceived an imbalance between personal patient burden and benefit. Ethical committee regulation, designed to protect patients, was perceived by some staff to detract from clarification and systematisation of incentivisation strategies. Finally, the structure and relationships within clinical research teams, in particular the low tacit status of recruitment skills, was seen as influential. CONCLUSIONS: The results of this case-study, conducted in an exemplary NHS academic research centre, highlight current systematic challenges to patient recruitment and retention in clinical studies more generally as seen from the perspective of staff at the 'sharp end' of recruiting. Staff experience is that, beyond individual clinical research design and protocol factors, wider organisational and extra-organisational norms, structures, and processes operate as significant facilitators or hindrances in the recruitment of patients as research subjects.

Association between socioeconomic deprivation and functional impairment after stroke: the South London Stroke Register.

BACKGROUND AND PURPOSE: Previous findings of the association between socioeconomic deprivation and functional impairment after stroke are inconsistent. There is a lack of data on long-term association. We assessed the association and differences by age, sex, prestroke comorbidities, and stroke phenotypes. METHODS: We examined data from the South London Stroke Register cohort of 1995 to 2011, recording all first-ever strokes in patients of all ages in South London. A total of 2104 patients were alive at 3 months after stroke. Socioeconomic deprivation was measured using the index of multiple deprivation based on patient postcodes, and functional impairment after stroke was defined as a Barthel index of <15. RESULTS: At 3 months after stroke, 643 patients had functional impairment (30.6%; 95% confidence interval, 28.6%-32.5%). Compared with the first quartile of index of multiple deprivation (the least deprived), multivariate-adjusted odds ratios for functional impairment in patients with the second, third, and fourth quartiles were 1.29 (95% confidence interval, 0.94-1.76), 1.33 (0.97-1.82), and 1.78 (1.31-2.43), overall P=0.004. The association was significant in patients aged ≥65 years (corresponding odds ratios were 1.49 [1.02-2.17], 1.21 [0.83-1.75], and 1.94 [1.34-2.81]; P=0.003); in women, P=0.008, in patients who do not have prestroke comorbidities, P=0.009, and in patients with ischemic stroke, P<0.001, but not significant in their counterpart patients. There were similar patterns of the associations of socioeconomic deprivation with impairment at 3 years after stroke. CONCLUSIONS: There are significant inequalities in short- and long-term functional recovery after stroke. General socioeconomic improvement, targeting groups at high risk of functional impairment is likely to reduce inequality in functional recovery after stroke.

Socioeconomic deprivation and provision of acute and long-term care after stroke: the South London Stroke Register cohort study.

BACKGROUND AND AIMS: Socioeconomic deprivation (SED) is associated with increased mortality after stroke, however, its associations with stroke care remains uncertain. We assessed the SED impacts on acute and long-term stroke care, and examined their ethnic differences and secular trends. METHODS: We used data from 4202 patients with first-ever stroke (mean age 70.1 years, 50.4% male, 20.4% black), collected by a population-based stroke register in South London, England from 1995 to 2010. Carstairs deprivation score was measured for each patient, taking the 1st as the least deprived and the 2nd to 5th quintiles as SED, and was related to 20 indicators of care in multivariate logistic regression models. RESULTS: Patients with SED had 29% and 35% statistically significant reductions in odds of being admitted to hospital and having swallow tests, respectively. The multivariate adjusted odds ratio (OR) for receiving five indicators of acute stroke care was 0.81 (95% CI 0.72 to 0.92). It was 0.76 (0.58 to 0.99) in black patients and 0.82 (0.71 to 0.96) in white patients; and 0.70 (0.58 to 0.84) in patients with stroke occurring before 2001 and 0.89 (0.75 to 1.05) since 2001. SED was further associated with receipt of some stroke care during 5 years of follow-up, including atrial fibrillation medication (0.63, 0.48 to 0.83), and in black patients physiotherapy and occupational therapy (0.32, 0.11 to 0.92). CONCLUSIONS: Stroke healthcare inequalities in England exist for some important indicators, although overall it has improved over time. The impact of SED may be stronger in black patients than in white patients. Further efforts are required to achieve stroke care equality.

Navigating stroke care: the experiences of younger stroke survivors.

PURPOSE: Although stroke is associated with ageing, a significant proportion of strokes occur in younger people. Younger stroke survivors have experienced care available as inappropriate to their needs. However, insufficient attention has been paid to how the social context shapes their experiences of care. We investigated this question with younger stroke survivors in Greater London, UK. METHOD: We conducted in-depth interviews with individuals aged between 24 and 62 years. Interviews were analysed thematically, with interpretation informed by Bourdieu's concepts of field, capital and habitus. RESULTS: In the acute care setting it was implicit for participants that expertise and guidance was to be prioritised and largely this was reported as what was received. Individuals' cultural capital shaped expectations to access information, but health care professionals' symbolic capital meant they controlled its provision. After discharge, professional guidance was still looked for, but many felt it was limited or unavailable. It was here that participants' social, cultural and economic capital became more important in experiences of care. CONCLUSIONS: The field of stroke shaped younger stroke survivors' experiences of care. Navigating stroke care was contingent on accessing different forms of capital. Differences in access to these resources influenced longer term adjustment after stroke. IMPLICATIONS FOR REHABILITATION: Stroke care can be conceptualised as a temporal field of social activity and relationships which shapes variations in experiences of care among younger stroke survivors, and differences in expectations of support at different time points after stroke. On entering the field of stroke participants reported needing health care professional guidance and expertise to manage the acute event, yet difficulties accessing information in hospital limited the agency of some individuals wanting to take an active role in their recovery. After discharge from hospital variations in experiences of care among participants were more evident, with a number still seeking professional guidance, and requiring the capital and agency to navigate the field of stroke. Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed.

Socioeconomic deprivation and survival after stroke: findings from the prospective South London Stroke Register of 1995 to 2011.

BACKGROUND AND PURPOSE: Previous findings of the association between socioeconomic deprivation (SED) and survival after stroke are inconsistent. There is less investigation on long-term survival. We assessed the associations in a multi-ethnic population in England. METHODS: We examined data from 4398 patients (3103 whites, 932 blacks, and 253 Asians/others) with first-ever stroke, collected by a population-based stroke register in South London from 1995 to 2011. SED was measured using the Carstairs index score-the higher score, the more deprived. It was analyzed in multivariate Cox regression models in relation to survival after stroke. RESULTS: During 17-year follow-up 2754 patients died. The quartile data of Carstairs score showed no significant association of SED with survival in patients, except for black Caribbeans and Africans. Black patients with the fourth quartile SED had a multivariate adjusted hazard ratio of 1.76 (95% confidence interval, 1.06-2.94) for 3-month mortality and 1.54 (1.00-2.37) for 1-year mortality. After adjustment for acute stroke care provisions, these were no longer significant. However, the sextile data of Carstairs score showed a consistent association of SED with survival after stroke; all patients with the sixth sextile had a fully adjusted hazard ratio of 1.23 (1.05-1.44) for 3-month mortality and 1.13 (1.01-1.25) for 17-year mortality. CONCLUSIONS: There is a weak but significant association of SED with reduced survival after stroke in England. SED in blacks may have a stronger impact on short-term survival when compared with white patients. Further efforts are required to achieve equality in survival among patients with stroke of different socioeconomic groups.

Trends in risk factor prevalence and management before first stroke: data from the South London Stroke Register 1995-2011.

BACKGROUND AND PURPOSE: Vascular risk factors are suboptimally managed internationally. This study investigated time trends in risk factors diagnosed before stroke and their treatment, and factors associated with appropriate medication use. METHODS: A total of 4416 patients with a first stroke were registered in the population-based South London Stroke Register from 1995 to 2011. Previously diagnosed risk factors and usual medications were collected from patients' primary care and hospital records. Trends and associations were assessed using multivariate logistic regression. RESULTS: Seventy-two percent of patients were diagnosed previously with 1 or more risk factors; 30% had diagnosed risk factors that were untreated. Hypercholesterolemia increased significantly during the study period; myocardial infarction and transient ischemic attack prevalences decreased. Antiplatelet prescription increased in atrial fibrillation (AF), myocardial infarction, and transient ischemic attack (AF, 37%-51%, P<0.001; myocardial infarction, 48%-69%, P<0.001; transient ischemic attack, 49%-61%, P=0.015). Anticoagulant prescription for AF showed a nonsignificant increase (12%-23%; P=0.059). Fewer older patients with AF were prescribed anticoagulants (age, >85 versus <65 years; adjusted relative risk, 0.19; 95% confidence interval, 0.08-0.41). Black ethnicity (adjusted relative risk, 1.17; 95% confidence interval, 1.10-1.23) and female sex (adjusted relative risk, 1.09; 95% confidence interval, 1.03-1.15) were associated with increased antihypertensive drug prescription; other medications did not vary by ethnicity or sex. CONCLUSIONS: Antiplatelet and cholesterol-lowering treatment prescribing have improved significantly over time; however, only a minority with AF received anticoagulants, and this did not improve significantly. Overall, 30% of strokes occurred in patients with previously diagnosed but untreated risk factors.

Innovations in major system reconfiguration in England: a study of the effectiveness, acceptability and processes of implementation of two models of stroke care.

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.

Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health.

OBJECTIVES: To investigate how contextual factors, as described by the World Health Organisation's International Classification of Functioning, Disability and Health (ICF), impact on stroke survivors' functioning and how needs are perceived in the long term after stroke. METHODS: Semi-structured interviews were conducted with 35 participants between 1 and 11 years after stroke. Data were analysed thematically using the ICF conceptual framework. RESULTS: Long-term needs related to activities of daily living, social participation, mobility aids, home adaptations, housing, financial support, rehabilitation, information and transport. Participants identified a range of ICF environmental and personal factors including 'support and relationships,' 'products and technology,' 'services, systems and policies,' 'attitudes,' life experiences, social position and personal attitudes. Interactions between these contextual factors shaped functioning and how long-term needs were perceived. Social support from family and friends was a key facilitator of functioning for most participants, buffering the impact of disabilities and mediating perceived needs. Needs were not always stroke specific as many participants experienced other health problems. DISCUSSION: The ICF framework was useful to investigate how contextual factors shaped functioning and mediated perceived long-term needs. Development of services to meet long-term needs among stroke survivors should consider the range of environmental and personal factors affecting how needs are perceived.