Patient outcomes up to 15 years after stroke: survival, disability, quality of life, cognition and mental health

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

Patient, carer and public involvement in major system change in acute stroke services: The construction of value

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

Exploring stroke survivors' and physiotherapists' views of self-management after stroke: a qualitative study in the UK.

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

Patient experience of centralised acute stroke care pathways

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

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

The incidence of all stroke and stroke subtype in the United Kingdom, 1985 to 2008: a systematic review

<p>Abstract</p> <p>Background</p> <p>There is considerable geographic variation in stroke mortality around the United Kingdom (UK). Whether this is due to geographical differences in incidence or case-fatality is unclear. We conducted a systematic review of high-quality studies documenting the incidence of any stroke and stroke subtypes, between 1985 and 2008 in the UK. We aimed to study geographic and temporal trends in relation to equivalent mortality trends.</p> <p>Methods</p> <p>MEDLINE and EMBASE were searched, reference lists inspected and authors of included papers were contacted. All rates were standardised to the European Standard Population for those over 45, and between 45 and 74 years. Stroke mortality rates for the included areas were then calculated to produce rate ratios of stroke mortality to incidence for each location.</p> <p>Results</p> <p>Five papers were included in this review. Geographic variation was narrow but incidence appeared to largely mirror mortality rates for all stroke. For men over 45, incidence (and confidence intervals) per 100,000 ranged from 124 (109-141) in South London, to 185 (164-208) in Scotland. For men, premature (45-74 years) stroke incidence per 100,000 ranged from 79 (67-94) in the North West, to 112 (95-132) in Scotland. Stroke subtype data was more geographically restricted, but did suggest there is no sizeable variation in incidence by subtype around the country. Only one paper, based in South London, had data on temporal trends. This showed that there has been a decline in stroke incidence since the mid 1990 s. This could not be compared to any other locations in this review.</p> <p>Conclusions</p> <p>Geographic variations in stroke incidence appear to mirror variations in mortality rates. This suggests policies to reduce inequalities in stroke mortality should be directed at risk factor profiles rather than treatment after a first incident event. More high quality stroke incidence data from around the UK are needed before this can be confirmed.</p

Evaluation of reconfigurations of acute stroke services in different regions of England and lessons for implementation: a mixed-methods study

Background: Centralising acute stroke services is an example of major system change (MSC). ‘Hub and spoke’ systems, consisting of a reduced number of services providing acute stroke care over the first 72 hours following a stroke (hubs), with a larger number of services providing care beyond this phase (spokes), have been proposed to improve care and outcomes. Objective: To use formative evaluation methods to analyse reconfigurations of acute stroke services in different regions of England and to identify lessons that will help to guide future reconfigurations, by studying the following contrasting cases: (1) London (implemented 2010) – all patients eligible for Hyperacute Stroke Units (HASUs); patients admitted 24 hours a day, 7 days a week; (2) Greater Manchester A (GMA) (2010) – only patients presenting within 4 hours are eligible for HASU treatment; one HASU operated 24/7, two operated from 07.00 to 19.00, Monday to Friday; (3) Greater Manchester B (GMB) (2015) – all patients eligible for HASU treatment (as in London); one HASU operated 24/7, two operated with admission extended to the hours of 07.00–23.00, Monday to Sunday; and (4) Midlands and East of England – planned 2012/13, but not implemented. Design: Impact was studied through a controlled before-and-after design, analysing clinical outcomes, clinical interventions and cost-effectiveness. The development, implementation and sustainability of changes were studied through qualitative case studies, documentation analysis (n = 1091), stakeholder interviews (n = 325) and non-participant observations (n = 92; ≈210 hours). Theory-based framework was used to link qualitative findings on process of change with quantitative outcomes. Results: Impact – the London centralisation performed significantly better than the rest of England (RoE) in terms of mortality [–1.1%, 95% confidence interval (CI) –2.1% to –0.1%], resulting in an estimated additional 96 lives saved per year beyond reductions observed in the RoE, length of stay (LOS) (–1.4 days, 95% –2.3 to –0.5 days) and delivering effective clinical interventions [e.g. arrival at a Stroke Unit (SU) within 4 hours of ‘clock start’ (when clock start refers to arrival at hospital for strokes occurring outside hospital or the appearance of symptoms for patients who are already in-patients at the time of stroke): London = 66.3% (95% CI 65.6% to 67.1%); comparator = 54.4% (95% CI 53.6% to 55.1%)]. Performance was sustained over 6 years. GMA performed significantly better than the RoE on LOS (–2.0 days, 95% CI –2.8 to –1.2 days) only. GMB (where 86% of patients were treated in HASU) performed significantly better than the RoE on LOS (–1.5 days, 95% CI –2.5 to –0.4 days) and clinical interventions [e.g. SU within 4 hours: GMB = 79.1% (95% CI 77.9% to 80.4%); comparator = 53.4% (95%CI 53.0% to 53.7%)] but not on mortality (–1.3%, 95% CI –2.7%to 0.01%; p = 0.05, accounting for reductions observed in RoE); however, there was a significant effect when examining GMB HASUs only (–1.8%, 95% CI –3.4% to –0.2%), resulting in an estimated additional 68 lives saved per year. All centralisations except GMB were cost-effective at 10 years, with a higher net monetary benefit than the RoE at a willingness to pay for a quality-adjusted life-year (QALY) of £20,000–30,000. Per 1000 patients at 10 years, London resulted in an additional 58 QALYs, GMA resulted in an additional 18 QALYs and GMB resulted in an additional 6 QALYs at costs of £1,014,363, –£470,848 and £719,948, respectively. GMB was cost-effective at 90 days. Despite concerns about the potential impact of increased travel times, patients and carers reported good experiences of centralised services; this relied on clear information at every stage. Planning change – combining top-down authority and bottom-up clinical leadership was important in co-ordinating multiple stakeholders to agree service models and overcome resistance. Implementation – minimising phases of change, use of data, service standards linked to financial incentives and active facilitation of changes by stroke networks was important. The 2013 reforms of the English NHS removed sources of top-down authority and facilitative capacity, preventing centralisation (Midlands and East of England) and delaying implementation (GMB). Greater Manchester’s Operational Delivery Network, developed to provide alternative network facilitation, and London’s continued use of standards suggested important facilitators of centralisation in a post-reform context. Limitations: The main limitation of our quantitative analysis was that we were unable to control for stroke severity. In addition, findings may not apply to non-urban settings. Data on patients’ quality of life were unavailable nationally, clinical interventions measured changed over time and national participation in audits varied. Some qualitative analyses were retrospective, potentially influencing participant views. Conclusions: Centralising acute stroke services can improve clinical outcomes and care provision. Factors related to the service model implemented, how change is implemented and the context in which it is implemented are influential in improvement. We recommend further analysis of how different types of leadership contribute to MSC, patient and carer experience during the implementation of change, the impact of change on further clinical outcomes (disability and QoL) and influence of severity of stroke on clinical outcomes. Finally, our findings should be assessed in relation to MSC implemented in other health-care specialties. Funding: The National Institute for Health Research Health Services and Delivery Research programme

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; P0.05), 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