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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.

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Supplemental material, sj-pdf-1-wso-10.1177_1747493020969367 for Addressing inactivity after stroke: The Collaborative Rehabilitation in Acute Stroke (CREATE) study by Fiona Jones, Karolina Gombert-, Stephanie Honey, Geoffrey Cloud, Ruth Harris, Alastair Macdonald, Christopher McKevitt, Glenn Robert and David Clarke in International Journal of Stroke

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Supplemental material, sj-pdf-1-wso-10.1177_1747493020969367 for Addressing inactivity after stroke: The Collaborative Rehabilitation in Acute Stroke (CREATE) study by Fiona Jones, Karolina Gombert-, Stephanie Honey, Geoffrey Cloud, Ruth Harris, Alastair Macdonald, Christopher McKevitt, Glenn Robert and David Clarke in International Journal of Stroke

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.

Drawing upon ethnographic observations of staff working within a research laboratory built around research and clinical data from twins, this article analyses 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.

Supplemental Material for Factors, trends, and long-term outcomes for stroke patients returning to work: The South London Stroke Register by Arup Sen, Alessandra Bisquera, Yanzhong Wang, Christopher J McKevitt, Anthony G Rudd, Charles D Wolfe and Ajay Bhalla in International Journal of Stroke

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, semi-structured interviews and thematic analysisParticipants People with hypertension, who had not experienced a cardiovascular event recruited from primary careSetting 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 underrepresented. 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 (e.g. 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.

Supporting figures, tables and methods for acute stroke cost-utility analysis. (DOCX 81 kb)

The National Institute for Health Research BioResource is not a typical biobank. It banks biological samples and other data, but also volunteer commitment to potential future research participation. Researchers can then, using the BioResource as an intermediary, invite volunteers who meet specific genotypic or phenotypic criteria to participate in studies. Using participant observation and semi-structured interviews with those involved in recruiting new and engaging existing volunteers, this paper explores how participation is understood and cultivated, and how (bio)value is produced in routine BioResource work. We contribute insights into a different configuration of biosocial participation where the engaged individual, as opposed to biological sample, is the site of value. Foregrounding the often ignored work of biobank staff, we demonstrate the iterative and reflexive way value is created and maintained through staff activity, and the different way actors make sense of the site and stability of this value.

Prisma-P checklist. (DOCX 33 kb)

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

BackgroundPrevious 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.MethodsThe 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.ResultsOf 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 = 2]) increased from 9% (1995-1998) to 30% (2011-2014) (p65) were significantly less likely to be prescribed an anticoagulant, with ethnicity, gender and deprivation showing no association with anticoagulation.ConclusionsMost 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.

To celebrate 20 years of an epidemiological study, the South London Stroke Register, we collaborated with student artists and stroke survivors to create an exhibition of visual arts displayed at a series of events in 2015-16. This paper explores the expectations placed on researchers to engage with different publics, touching on current debates around institutional support and recognition. We critically reflect on the project process, identifying challenges and offering recommendations. We include the perspectives of the stroke survivors and the student artists, and examples of the artwork.

Implementing major system change in healthcare is not well understood. This gap may be addressed by analysing change in terms of interrelated components identified in the implementation literature, including decision to change, intervention selection, implementation approaches, implementation outcomes, and intervention outcomes.

Service level interviews topic guide. (DOCX 20 kb)

Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself.To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means.We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis.We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.

Traduit de l'anglais par Solange Pinton Récemment, l'hebdomadaire italien Epoca a consacré une étude intitulée Italia dei miracoli aux visionnaires, guérisseurs, saints hommes et saintes femmes chargés, croit-on, de pouvoirs extraordinaires – une cinquantaine dans l'Italie d'aujourd'hui, estime l'auteur, dont « plus de la moitié sont des charlatans [...], le nombre de vrais mystiques s'élevant à dix environ, en comptant ceux récemment décédés » (Vigorelli 1994 : 54). Le Padre Pio de Pietrelc...

BACKGROUND: Implementing major system change in healthcare is not well understood. This gap may be addressed by analysing change in terms of interrelated components identified in the implementation literature, including decision to change, intervention selection, implementation approaches, implementation outcomes, and intervention outcomes.METHODS: We conducted a qualitative study of two cases of major system change: the centralisation of acute stroke services in Manchester and London, which were associated with significantly different implementation outcomes (fidelity to referral pathway) and intervention outcomes (provision of evidence-based care, patient mortality). We interviewed stakeholders at national, pan-regional, and service-levels (n = 125) and analysed 653 documents. Using a framework developed for this study from the implementation science literature, we examined factors influencing implementation approaches; how these approaches interacted with the models selected to influence implementation outcomes; and their relationship to intervention outcomes.RESULTS: London and Manchester's differing implementation outcomes were influenced by the different service models selected and implementation approaches used. Fidelity to the referral pathway was higher in London, where a 'simpler', more inclusive model was used, implemented with a 'big bang' launch and 'hands-on' facilitation by stroke clinical networks. In contrast, a phased approach of a more complex pathway was used in Manchester, and the network acted more as a platform to share learning. Service development occurred more uniformly in London, where service specifications were linked to financial incentives, and achieving standards was a condition of service launch, in contrast to Manchester. 'Hands-on' network facilitation, in the form of dedicated project management support, contributed to achievement of these standards in London; such facilitation processes were less evident in Manchester.CONCLUSIONS: Using acute stroke service centralisation in London and Manchester as an example, interaction between model selected and implementation approaches significantly influenced fidelity to the model. The contrasting implementation outcomes may have affected differences in provision of evidence-based care and patient mortality. The framework used in this analysis may support planning and evaluating major system changes, but would benefit from application in different healthcare contexts.