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Large-scale implementation of stroke early supported discharge: the WISE realist mixed-methods study
Background In England, the provision of early supported discharge is recommended as part of an evidence-based stroke care pathway. Objectives To investigate the effectiveness of early supported discharge services when implemented at scale in practice and to understand how the context within which these services operate influences their implementation and effectiveness. Design A mixed-methods study using a realist evaluation approach and two interlinking work packages was undertaken. Three programme theories were tested to investigate the adoption of evidence-based core components, differences in urban and rural settings, and communication processes. Setting and interventions Early supported discharge services across a large geographical area of England, covering the West and East Midlands, the East of England and the North of England. Participants Work package 1: historical prospective patient data from the Sentinel Stroke National Audit Programme collected by early supported discharge and hospital teams. Work package 2: NHS staff (n = 117) and patients (n = 30) from six purposely selected early supported discharge services. Data and main outcome Work package 1: a 17-item early supported discharge consensus score measured the adherence to evidence-based core components defined in an international consensus document. The effectiveness of early supported discharge was measured with process and patient outcomes and costs. Work package 2: semistructured interviews and focus groups with NHS staff and patients were undertaken to investigate the contextual determinants of early supported discharge effectiveness. Results A variety of early supported discharge service models had been adopted, as reflected by the variability in the early supported discharge consensus score. A one-unit increase in early supported discharge consensus score was significantly associated with a more responsive early supported discharge service and increased treatment intensity. There was no association with stroke survivor outcome. Patients who received early supported discharge in their stroke care pathway spent, on average, 1 day longer in hospital than those who did not receive early supported discharge. The most rural services had the highest service costs per patient. NHS staff identified core evidence-based components (e.g. eligibility criteria, co-ordinated multidisciplinary team and regular weekly multidisciplinary team meetings) as central to the effectiveness of early supported discharge. Mechanisms thought to streamline discharge and help teams to meet their responsiveness targets included having access to a social worker and the quality of communications and transitions across services. The role of rehabilitation assistants and an interdisciplinary approach were facilitators of delivering an intensive service. The rurality of early supported discharge services, especially when coupled with capacity issues and increased travel times to visit patients, could influence the intensity of rehabilitation provision and teams’ flexibility to adjust to patients’ needs. This required organising multidisciplinary teams and meetings around the local geography. Findings also highlighted the importance of good leadership and communication. Early supported discharge staff highlighted the need for collaborative and trusting relationships with patients and carers and stroke unit staff, as well as across the wider stroke care pathway. Limitations Work package 1: possible influence of unobserved variables and we were unable to determine the effect of early supported discharge on patient outcomes. Work package 2: the pragmatic approach led to ‘theoretical nuggets’ rather than an overarching higher-level theory. Conclusions The realist evaluation methodology allowed us to address the complexity of early supported discharge delivery in real-world settings. The findings highlighted the importance of context and contextual features and mechanisms that need to be either addressed or capitalised on to improve effectiveness. Trial registration Current Controlled Trials ISRCTN15568163. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 22. See the NIHR Journals Library website for further project information.
Background Drug-related problems and potentially inappropriate prescribing impose a huge burden on patients and the health-care system. The most widely used tools for appropriate prescription in older adults in England and in other European countries are the Screening Tool of Older People’s Prescriptions (STOPP)/Screening Tool to Alert to the Right Treatment (START) tools. STOPP/START tools support medicines optimisation for older adults. Objectives To identify, test and refine the programme theories underlying how interventions based on the STOPP/START tools are intended to work, for whom, in what circumstances and why, as well as the resource use and cost requirements or impacts. Design A realist synthesis. Setting Primary care, hospital care and nursing homes. Patients Patients aged ≥ 65 years. Interventions Any intervention based on the use of the STOPP/START tools. Review methods Database and web-searching was carried out to retrieve relevant evidence to identify and test programme theories about how interventions based on the use of the STOPP/START tools work. A project reference group made up of health-care professionals, NHS decision-makers, older people, carers and members of the public was set up. In phase 1 we identified programme theories about STOPP/START interventions on how, for whom, in what contexts and why they are intended to work. We searched the peer-reviewed and grey literature to identify documents relevant to the research questions. We interviewed experts in the field in our reference group to gain input on our list of candidate context–mechanism–outcome configurations, to identify additional context–mechanism–outcome configurations and to identify additional literature and/or relevant concepts. In phase 2 we reviewed and synthesised relevant published and unpublished empirical evidence and tested the programme theories using evidence from a larger set of empirical studies. Results We developed a single logic model structured around three key mechanisms: (1) personalisation, (2) systematisation and (3) evidence implementation. Personalisation: STOPP/START-based interventions are based on shared decision-making, taking into account patient preferences, experiences and expectations (mechanisms), leading to increased patient awareness, adherence, satisfaction, empowerment and quality of life (outcomes). Systematisation: STOPP/START tools provide a standardised/systematic approach for medication reviews (mechanisms), leading to changes in professional and organisational culture and burden/costs (outcomes). Evidence implementation: delivery of STOPP/START-based interventions is based on the implementation of best evidence (mechanisms), reducing adverse outcomes through appropriate prescribing/deprescribing (outcomes). For theory testing, we identified 40 studies of the impact of STOPP/START-based interventions in hospital settings, nursing homes, primary care and community pharmacies. Most of the interventions used multiple mechanisms. We found support for the impact of the personalisation and evidence implementation mechanisms on selected outcome variables, but similar impact was achieved by interventions not relying on these mechanisms. We also observed that the impact of interventions was linked to the proximity of the selected outcomes to the intervention in the logic model, resulting in a clearer benefit for appropriateness of prescribing, adverse drug events and prescription costs. Limitations None of the available studies had been explicitly designed for evaluating underlying causal mechanisms, and qualitative information was sparse. Conclusions No particular configuration of the interventions is associated with a greater likelihood of improved outcomes in given settings. Study registration This study is registered as PROSPERO CRD42018110795. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 23. See the NIHR Journals Library website for further project information.
Background The NHS emergency and urgent care system is under pressure as demand for services increases each year. NHS 111 is a telephone triage service designed to provide advice and signposting to appropriate services for people with urgent health-care problems. A new service, NHS 111 Online, has been introduced across England as a digital alternative that can be accessed using a website or a smartphone application. The effects and usefulness of this service are unknown. Objectives To explore the impact of NHS 111 Online on the related telephone service and urgent care system activity and the experiences of people who use those services. Design and methods A mixed-methods design of five related work packages comprising an evidence review; a quantitative before-and-after time series analysis of changes in call activity (18/38 sites); a descriptive comparison of telephone and online services with qualitative survey (telephone, n = 795; online, n = 3728) and interview (32 participants) studies of service users; a qualitative interview study (16 participants) of staff; and a cost–consequences analysis. Results The online service had little impact on the number of triaged calls to the NHS 111 telephone service. For every 1000 online contacts, triaged telephone calls increased by 1.3% (1.013, 95% confidence interval 0.996 to 1.029; p = 0.127). Recommendations to attend emergency and urgent care services increased between 6.7% and 4.2%. NHS 111 Online users were less satisfied than users of the telephone service (50% vs. 71%; p < 0.001), and less likely to recommend to others (57% vs. 69%; p < 0.001) and to report full compliance with the advice given (67.5% vs. 88%; p < 0.001). Online users were less likely to report contacting emergency services and more likely to report not making any contact with a health service (31% vs. 16%; p < 0.001) within 7 days of contact. Thirty-five per cent of online users reported that they did not want to use the telephone service, whereas others preferred its convenience and speed. NHS 111 telephone staff reported no discernible increase or decrease in their workload during the first year of operation of NHS 111 Online. If online and telephone services operate in parallel, then the annual costs will be higher unless ≥ 38% of telephone contacts move to online contacts. Conclusions There is some evidence that the new service has the potential to create new demand. The service has expanded significantly, so it is important to find ways of promoting the right balance in numbers of people who use the online service instead of the telephone service if it is to be effective. There is a clear need and preference by some people for an online service. Better information about when to use this service and improvements to questioning may encourage more uptake. Limitations The lack of control arm means that impact could have been an effect of other factors. This work took place during the early implementation phase, so findings may change as the service expands. Future work Further development of the online triage process to make it more ‘user friendly’ and to enable users to trust the advice given online could improve use and increase satisfaction. Better understanding of the characteristics of the telephone and online populations could help identify who is most likely to benefit and could improve information about when to use the service. Trial registration Current Controlled Trials ISRCTN51801112. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 21. See the NIHR Journals Library website for further project information.
Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improving health care for residents, there is a lack of knowledge about the role of general practitioners. Objectives First, to review reports of research and quality improvement (or similar change management) in care homes to explore how general practitioners have been involved. Second, to develop programme theories explaining the role of general practitioners in improvement initiatives and outcomes. Design A realist review was selected to address the complexity of integration of general practice and care homes. Setting Care homes for older people in the UK, including residential and nursing homes. Participants The focus of the literature review was the general practitioner, along with care home staff and other members of multidisciplinary teams. Alongside the literature, we interviewed general practitioners and held consultations with a Context Expert Group, including a care home representative. Interventions The primary search did not specify interventions, but captured the range of interventions reported. Secondary searches focused on medication review and end-of-life care because these interventions have described general practitioner involvement. Outcomes We sought to capture processes or indicators of good-quality care. Data sources Sources were academic databases [including MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature, PsycInfo® (American Psychological Association, Washington, DC, USA), Web of Science™ (Clarivate Analytics, Philadelphia, PA, USA) and Cochrane Collaboration] and grey literature using Google Scholar (Google Inc., Mountain View, CA, USA). Methods Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines were followed, comprising literature scoping, interviews with general practitioners, iterative searches of academic databases and grey literature, and synthesis and development of overarching programme theories. Results Scoping indicated the distinctiveness of the health and care system in UK and, because quality improvement is context dependent, we decided to focus on UK studies because of potential problems in synthesising across diverse systems. Searches identified 73 articles, of which 43 were excluded. To summarise analysis, programme theory 1 was ‘negotiated working with general practitioners’ where other members of the multidisciplinary team led initiatives and general practitioners provided support with the parts of improvement where their skills as primary care doctors were specifically required. Negotiation enabled matching of the diverse ways of working of general practitioners with diverse care home organisations. We found evidence that this could result in improvements in prescribing and end-of-life care for residents. Programme theory 2 included national or regional programmes that included clearly specified roles for general practitioners. This provided clarity of expectation, but the role that general practitioners actually played in delivery was not clear. Limitations One reviewer screened all search results, but two reviewers conducted selection and data extraction steps. Conclusions If local quality improvement initiatives were flexible, then they could be used to negotiate to build a trusting relationship with general practitioners, with evidence from specific examples, and this could improve prescribing and end-of-life care for residents. Larger improvement programmes aimed to define working patterns and build suitable capacity in care homes, but there was little evidence about the extent of local general practitioner involvement. Future work Future work should describe the specific role, capacity and expertise of general practitioners, as well as the diversity of relationships between general practitioners and care homes. Study registration This study is registered as PROSPERO CRD42019137090. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 20. See the NIHR Journals Library website for further project information.
Background Care home staff have a critical bearing on quality. The staff employed, the training they receive and how well they identify and manage residents’ needs are likely to influence outcomes. The Care Act 2014 (Great Britain. The Care Act 2014. London: The Stationery Office; 2014) requires services to improve ‘well-being’, but many residents cannot self-report and are at risk of exclusion from giving their views. The Adult Social Care Outcomes Toolkit enables social care-related quality of life to be measured using a mixed-methods approach. There is currently no equivalent way of measuring aspects of residents’ health-related quality of life. We developed new tools for measuring pain, anxiety and depression using a mixed-methods approach. We also explored the relationship between care home quality, residents’ outcomes, and the skill mix and employment conditions of the workforce who support them. Objectives The objectives were to develop and test measures of pain, anxiety and depression for residents unable to self-report; to assess the extent to which regulator quality ratings reflect residents’ care-related quality of life; and to assess the relationship between aspects of the staffing of care homes and the quality of care homes. Design This was a mixed-methods study. Setting The setting was care homes for older adults in England. Participants Care home residents participated. Results Three measures of pain, anxiety and low mood were developed and tested, using a mixed-methods approach, with 182 care home residents in 20 care homes (nursing and residential). Psychometric testing found that the measures had good construct validity. The mixed-methods approach was both feasible and necessary with this population, as the majority of residents could not self-report. Using a combined data set (n = 475 residents in 54 homes) from this study and the Measuring Outcomes in Care Homes study (Towers AM, Palmer S, Smith N, Collins G, Allan S. A cross-sectional study exploring the relationship between regulator quality ratings and care home residents’ quality of life in England. Health Qual Life Outcomes 2019;17:22) we found a significant positive association between residents’ social care-related quality of life and regulator (i.e. Care Quality Commission) quality ratings. Multivariate regression revealed that homes rated ‘good/outstanding’ are associated with a 12% improvement in mean current social care-related quality of life among residents who have higher levels of dependency. Secondary data analysis of a large, national sample of care homes over time assessed the impact of staffing and employment conditions on Care Quality Commission quality ratings. Higher wages and a higher prevalence of training in both dementia and dignity-/person-centred care were positively associated with care quality, whereas high staff turnover and job vacancy rates had a significant negative association. A 10% increase in the average care worker wage increased the likelihood of a ‘good/outstanding’ rating by 7%. Limitations No care homes rated as inadequate were recruited to the study. Conclusions The most dependent residents gain the most from homes rated ‘good/outstanding’. However, measuring the needs and outcomes of these residents is challenging, as many cannot self-report. A mixed-methods approach can reduce methodological exclusion and an over-reliance on proxies. Improving working conditions and reducing staff turnover may be associated with better outcomes for residents. Future work Further work is required to explore the relationship between pain, anxiety and low mood and other indicators of care homes quality and to examine the relationship between wages, training and social care outcomes. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 19. See the NIHR Journals Library website for further project information.
Background For people in mental health crisis, acute day units provide daily structured sessions and peer support in non-residential settings as an alternative to crisis resolution teams. Objectives To investigate the provision, effectiveness, intervention acceptability and re-admission rates of acute day units. Design Work package 1 – mapping and national questionnaire survey of acute day units. Work package 2.1 – cohort study comparing outcomes during a 6-month period between acute day unit and crisis resolution team participants. Work package 2.2 – qualitative interviews with staff and service users of acute day units. Work package 3 – a cohort study within the Mental Health Minimum Data Set exploring re-admissions to acute care over 6 months. A patient and public involvement group supported the study throughout. Setting and participants Work package 1 – all non-residential acute day units (NHS and voluntary sector) in England. Work packages 2.1 and 2.2 – four NHS trusts with staff, service users and carers in acute day units and crisis resolution teams. Work package 3 – all individuals using mental health NHS trusts in England. Results Work package 1 – we identified 27 acute day units in 17 out of 58 trusts. Acute day units are typically available on weekdays from 10 a.m. to 4 p.m., providing a wide range of interventions and a multidisciplinary team, including clinicians, and having an average attendance of 5 weeks. Work package 2.1 – we recruited 744 participants (acute day units, n = 431; crisis resolution teams, n = 312). In the primary analysis, 21% of acute day unit participants (vs. 23% of crisis resolution team participants) were re-admitted to acute mental health services over 6 months. There was no statistically significant difference in the fully adjusted model (acute day unit hazard ratio 0.78, 95% confidence interval 0.54 to 1.14; p = 0.20), with highly heterogeneous results between trusts. Acute day unit participants had higher satisfaction and well-being scores and lower depression scores than crisis resolution team participants. The health economics analysis found no difference in resource use or cost between the acute day unit and crisis resolution team groups in the fully adjusted analysis. Work package 2.2 – 36 people were interviewed (acute day unit staff, n = 12; service users, n = 21; carers, n = 3). There was an overwhelming consensus that acute day units are highly valued. Service users found the high amount of contact time and staff continuity, peer support and structure provided by acute day units particularly beneficial. Staff also valued providing continuity, building strong therapeutic relationships and providing a variety of flexible, personalised support. Work package 3 – of 231,998 individuals discharged from acute care (crisis resolution team, acute day unit or inpatient ward), 21.4% were re-admitted for acute treatment within 6 months, with women, single people, people of mixed or black ethnicity, those living in more deprived areas and those in the severe psychosis care cluster being more likely to be re-admitted. Little variation in re-admissions was explained at the trust level, or between trusts with and trusts without acute day units (adjusted odds ratio 0.96, 95% confidence interval 0.80 to 1.15). Limitations In work package 1, some of the information is likely to be incomplete as a result of trusts’ self-reporting. There may have been recruitment bias in work packages 2.1 and 2.2. Part of the health economics analysis relied on clinical Health of the Nations Outcome Scale ratings. The Mental Health Minimum Data Set did not contain a variable identifying acute day units, and some covariates had a considerable number of missing data. Conclusions Acute day units are not provided routinely in the NHS but are highly valued by staff and service users, giving better outcomes in terms of satisfaction, well-being and depression than, and no significant differences in risk of re-admission or increased costs from, crisis resolution teams. Future work should investigate wider health and care system structures and the place of acute day units within them; the development of a model of best practice for acute day units; and staff turnover and well-being (including the impacts of these on care). Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 18. See the NIHR Journals Library website for further project information.
Background As people age and accumulate long-term conditions, their physical activity and physical function declines, resulting in disability and loss of independence. Primary care is well placed to empower individuals and communities to reduce this decline; however, the best approach is uncertain. Objectives To develop a programme theory to explain the mechanisms through which interventions improve physical activity and physical function in people with long-term conditions in different primary care contexts, and to co-design a prototype intervention. Data sources Systematic literature searches of relevant databases with forwards and backwards citation tracking, grey literature searches and further purposive searches were conducted. Qualitative data were collected through workshops and interviews. Design Realist evidence synthesis and co-design for primary care service innovation. Setting Primary care in Wales and England. Participants Stakeholders included people with long-term conditions, primary care professionals, people working in relevant community roles and researchers. Methods The realist evidence synthesis combined evidence from varied sources of literature with the views, experiences and ideas of stakeholders. The resulting context, mechanism and outcome statements informed three co-design workshops and a knowledge mobilisation workshop for primary care service innovation. Results Five context, mechanism and outcome statements were developed. (1) Improving physical activity and function is not prioritised in primary care (context). If the practice team culture is aligned to the elements of physical literacy (mechanism), then physical activity promotion will become routine and embedded in usual care (outcome). (2) Physical activity promotion is inconsistent and unco-ordinated (context). If specific resources are allocated to physical activity promotion (in combination with a supportive practice culture) (mechanism), then this will improve opportunities to change behaviour (outcome). (3) People with long-term conditions have varying levels of physical function and physical activity, varying attitudes to physical activity and differing access to local resources that enable physical activity (context). If physical activity promotion is adapted to individual needs, preferences and local resources (mechanism), then this will facilitate a sustained improvement in physical activity (outcome). (4) Many primary care practice staff lack the knowledge and confidence to promote physical activity (context). If staff develop an improved sense of capability through education and training (mechanism), then they will increase their engagement with physical activity promotion (outcome). (5) If a programme is credible with patients and professionals (context), then trust and confidence in the programme will develop (mechanism) and more patients and professionals will engage with the programme (outcome). A prototype multicomponent intervention was developed. This consisted of resources to nurture a culture of physical literacy, materials to develop the role of a credible professional who can promote physical activity using a directory of local opportunities and resources to assist with individual behaviour change. Limitations Realist synthesis and co-design is about what works in which contexts, so these resources and practice implications will need to be modified for different primary care contexts. Conclusions We developed a programme theory to explain how physical activity could be promoted in primary care in people with long-term conditions, which informed a prototype intervention. Future work A future research programme could further develop the prototype multicomponent intervention and assess its acceptability in practice alongside existing schemes before it is tested in a feasibility study to inform a future randomised controlled trial. Study registration This study is registered as PROSPERO CRD42018103027. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 16. See the NIHR Journals Library website for further project information.
Background In 2013, 70% of people who were homeless on admission to hospital were discharged back to the street without having their care and support needs addressed. In response, the UK government provided funding for 52 new specialist homeless hospital discharge schemes. This study employed RAMESES II (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) guidelines between September 2015 and 2019 to undertake a realist evaluation to establish what worked, for whom, under what circumstances and why. It was hypothesised that delivering outcomes linked to consistently safe, timely care transfers for homeless patients would depend on hospital discharge schemes implementing a series of high-impact changes (resource mechanisms). These changes encompassed multidisciplinary discharge co-ordination (delivered through clinically led homeless teams) and ‘step-down’ intermediate care. These facilitated time-limited care and support and alternative pathways out of hospital for people who could not go straight home. Methods The realist hypothesis was tested empirically and refined through three work packages. Work package 1 generated seven qualitative case studies, comparing sites with different types of specialist homeless hospital discharge schemes (n = 5) and those with no specialist discharge scheme (standard care) (n = 2). Methods of data collection included interviews with 77 practitioners and stakeholders and 70 people who were homeless on admission to hospital. A ‘data linkage’ process (work package 2) and an economic evaluation (work package 3) were also undertaken. The data linkage process resulted in data being collected on > 3882 patients from 17 discharge schemes across England. The study involved people with lived experience of homelessness in all stages. Results There was strong evidence to support our realist hypothesis. Specialist homeless hospital discharge schemes employing multidisciplinary discharge co-ordination and ‘step-down’ intermediate care were more effective and cost-effective than standard care. Specialist care was shown to reduce delayed transfers of care. Accident and emergency visits were also 18% lower among homeless patients discharged at a site with a step-down service than at those without. However, there was an impact on the effectiveness of the schemes when they were underfunded or when there was a shortage of permanent supportive housing and longer-term care and support. In these contexts, it remained (tacitly) accepted practice (across both standard and specialist care sites) to discharge homeless patients to the streets, rather than delay their transfer. We found little evidence that discharge schemes fired a change in reasoning with regard to the cultural distance that positions ‘homeless patients’ as somehow less vulnerable than other groups of patients. We refined our hypothesis to reflect that high-impact changes need to be underpinned by robust adult safeguarding. Strengths and limitations To our knowledge, this is the largest study of the outcomes of homeless patients discharged from hospital in the UK. Owing to issues with the comparator group, the effectiveness analysis undertaken for the data linkage was limited to comparisons of different types of specialist discharge scheme (rather than specialist vs. standard care). Future work There is a need to consider approaches that align with those for value or alliance-based commissioning where the evaluative gaze is shifted from discrete interventions to understanding how the system is working as a whole to deliver outcomes for a defined patient population. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 17. See the NIHR Journals Library website for further project information.
Background For systematic reviews to be rigorous, deliverable and useful, they need a well-defined review question. Scoping for a review also requires the specification of clear inclusion criteria and planned synthesis methods. Guidance is lacking on how to develop these, especially in the context of undertaking rapid and responsive systematic reviews to inform health services and health policy. Objective This report describes and discusses the experiences of review scoping of three commissioned research centres that conducted evidence syntheses to inform health and social care organisation, delivery and policy in the UK, between 2017 and 2020. Data sources Sources included researcher recollection, project meeting minutes, e-mail correspondence with stakeholders and scoping searches, from allocation of a review topic through to review protocol agreement. Methods We produced eight descriptive case studies of selected reviews from the three teams. From case studies, we identified key issues that shape the processes of scoping and question formulation for evidence synthesis. The issues were then discussed and lessons drawn. Findings Across the eight diverse case studies, we identified 14 recurrent issues that were important in shaping the scoping processes and formulating a review’s questions. There were ‘consultative issues’ that related to securing input from review commissioners, policy customers, experts, patients and other stakeholders. These included managing and deciding priorities, reconciling different priorities/perspectives, achieving buy-in and engagement, educating the end-user about synthesis processes and products, and managing stakeholder expectations. There were ‘interface issues’ that related to the interaction between the review team and potential review users. These included identifying the niche/gap and optimising value, assuring and balancing rigour/reliability/relevance, and assuring the transferability/applicability of study evidence to specific policy/service user contexts. There were also ‘technical issues’ that were associated with the methods and conduct of the review. These were choosing the method(s) of synthesis, balancing fixed and fluid review questions/components/definitions, taking stock of what research already exists, mapping versus scoping versus reviewing, scoping/relevance as a continuous process and not just an initial stage, and calibrating general compared with specific and broad compared with deep coverage of topics. Limitations As a retrospective joint reflection by review teams on their experiences of scoping processes, this report is not based on prospectively collected research data. In addition, our evaluations were not externally validated by, for example, policy and service evidence users or patients and the public. Conclusions We have summarised our reflections on scoping from this programme of reviews as 14 common issues and 28 practical ‘lessons learned’. Effective scoping of rapid, responsive reviews extends beyond information exchange and technical procedures for specifying a ‘gap’ in the evidence. These considerations work alongside social processes, in particular the building of relationships and shared understanding between reviewers, research commissioners and potential review users that may be reflective of consultancy, negotiation and co-production models of research and information use. Funding This report has been based on work commissioned by the National Institute for Health Research (NIHR) Health Services and Delivery Research (HSDR) programme as three university-based evidence synthesis centres to inform the organisation, delivery and commissioning of health and social care; at the University of Exeter (NIHR 16/47/22), the University of Sheffield (NIHR 16/47/17) and the University of York (NIHR 16/47/11). This report was commissioned by the NIHR HSDR programme as a review project (NIHR132708) within the NIHR HSDR programme. This project was funded by the NIHR HSDR programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 15. See the NIHR Journals Library website for further project information.
Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.
