Effectiveness-implementation hybrid type 2 study evaluating an intervention to support 'information work' in dementia care: an implementation study protocol.

INTRODUCTION: Patients with long-term conditions consistently report a lack of information around services and support available to them. This unmet need for information is significant among people with dementia and family carers. A quality improvement intervention is being carried out to tackle this issue as part of a co-creation initiative in the North East of England (UK). The intervention consists of the dissemination (via the local Community Mental Health Services for Older People) of a leaflet about services available to people with dementia and their family carers in the study site. This protocol is reported in accordance with the Standards for Reporting Implementation Studies. METHODS AND ANALYSIS: This effectiveness-implementation hybrid type 2 study aims at understanding (1) the unfolding and outcomes of the implementation strategy, (2) the outcomes of the intervention (for people with dementia and family carers, staff implementing the intervention and local service providers) and (3) the contribution of co-creation to the design and implementation of the intervention and its outcomes. The prospective theory of change of the intervention articulated by local stakeholders is used as a reference framework against which to assess the implementation and outcomes of the intervention. Evaluation data will be collected through in-depth interviews with people with dementia and family carers receiving the intervention, staff implementing the intervention and managers from local service providers. Referral data from local service providers will be collected to triangulate the interview data. A focus group with key stakeholders will support the sense-making of findings. The realist configuration of mechanism-context-outcome, operationalised using an information behaviour model, will inform data analysis and interpretation. ETHICS AND DISSEMINATION: Ethical and research governance approvals have been obtained from the West Midlands-South Birmingham Research Ethics Committee. The results of the study will be submitted for publication in peer-reviewed journals and disseminated through conferences.

A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia.

BACKGROUND: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet. Current research lacks a conceptual framework for explaining variation in satisfaction of care needs. This work develops a conceptual framework mapped onto the care delivery process to explain variations in whether, when and why care needs of people with dementia are met and to expose individual-, service-, system-level factors that enable or hinder needs satisfaction. METHODS: Data collected through 24 in-depth interviews and two focus groups (10 participants) with people with dementia and family carers living in the North East of England (UK) were analysed thematically to develop a typology of care needs. The need most frequently reported for people with dementia (i.e. for support to go out and about) was analysed using themes stemming from the conceptual framework which combined candidacy and discrepancy theories. RESULTS: The operationalisation of the framework showed that satisfaction of the need to go out was first determined at the point of service access, affected by issues about navigation, adjudication, permeability, users' resistance to offers, users' appearance, and systems-level operating conditions, and, subsequently, at the point of service use, when factors related to service structure and care process determined (dis)satisfaction with service and, hence, further contributed to met or unmet need. CONCLUSION: The conceptual framework pinpoints causes of variations in satisfaction of care needs which can be addressed when designing interventions and service improvements.

Preventing type 2 diabetes: systematic review of studies of cost-effectiveness of lifestyle programmes and metformin, with and without screening, for pre-diabetes.

OBJECTIVE: Explore the cost-effectiveness of lifestyle interventions and metformin in reducing subsequent incidence of type 2 diabetes, both alone and in combination with a screening programme to identify high-risk individuals. DESIGN: Systematic review of economic evaluations. DATA SOURCES AND ELIGIBILITY CRITERIA: Database searches (Embase, Medline, PreMedline, NHS EED) and citation tracking identified economic evaluations of lifestyle interventions or metformin alone or in combination with screening programmes in people at high risk of developing diabetes. The International Society for Pharmaco-economics and Outcomes Research's Questionnaire to Assess Relevance and Credibility of Modelling Studies for Informing Healthcare Decision Making was used to assess study quality. RESULTS: 27 studies were included; all had evaluated lifestyle interventions and 12 also evaluated metformin. Primary studies exhibited considerable heterogeneity in definitions of pre-diabetes and intensity and duration of lifestyle programmes. Lifestyle programmes and metformin appeared to be cost effective in preventing diabetes in high-risk individuals (median incremental cost-effectiveness ratios of £7490/quality-adjusted life-year (QALY) and £8428/QALY, respectively) but economic estimates varied widely between studies. Intervention-only programmes were in general more cost effective than programmes that also included a screening component. The longer the period evaluated, the more cost-effective interventions appeared. In the few studies that evaluated other economic considerations, budget impact of prevention programmes was moderate (0.13%-0.2% of total healthcare budget), financial payoffs were delayed (by 9-14 years) and impact on incident cases of diabetes was limited (0.1%-1.6% reduction). There was insufficient evidence to answer the question of (1) whether lifestyle programmes are more cost effective than metformin or (2) whether low-intensity lifestyle interventions are more cost effective than the more intensive lifestyle programmes that were tested in trials. CONCLUSIONS: The economics of preventing diabetes are complex. There is some evidence that diabetes prevention programmes are cost effective, but the evidence base to date provides few clear answers regarding design of prevention programmes because of differences in denominator populations, definitions, interventions and modelling assumptions.

STAR--people-powered prioritization: a 21st-century solution to allocation headaches.

The aim of cost effectiveness analysis (CEA) is to inform the allocation of scarce resources. CEA is routinely used in assessing the cost-effectiveness of specific health technologies by agencies such as the National Institute for Health and Clinical Excellence (NICE) in England and Wales. But there is extensive evidence that because of barriers of accessibility and acceptability, CEA has not been used by local health planners in their annual task of allocating fixed budgets to a wide range of types of health care. This paper argues that these planners can use Socio Technical Allocation of Resources (STAR) for that task. STAR builds on the principles of CEA and the practice of program budgeting and marginal analysis. STAR uses requisite models to assess the cost-effectiveness of all interventions considered for resource reallocation by explicitly applying the theory of health economics to evidence of scale, costs, and benefits, with deliberation facilitated through an interactive social process of engaging key stakeholders. In that social process, the stakeholders generate missing estimates of scale, costs, and benefits of the interventions; develop visual models of their relative cost-effectiveness; and interpret the results. We demonstrate the feasibility of STAR by showing how it was used by a local health planning agency of the English National Health Service, the Isle of Wight Primary Care Trust, to allocate a fixed budget in 2008 and 2009.

Using an epidemiological model to investigate unwarranted variation: the case of ventilation tubes for otitis media with effusion in England.

OBJECTIVES: To investigate unwarranted variation in ventilation tube insertions for otitis media with effusion in children in England. This procedure is known to be 'overused' from clinical audits, as only one in three ventilation tube insertions conforms to the appropriateness criteria of the National Institute for Health and Care Excellence (NICE); but audits cannot identify the scale of 'underuse' - i.e. patients who would benefit but are not treated. METHODS: To explore both 'underuse' and 'overuse' of ventilation tubes for otitis media with effusion, we developed an epidemiological model based on: definitions of children with otitis media with effusion expected to benefit from ventilation tubes according to NICE guidance; epidemiological and clinical information from a systematic review; and expert judgement. A range of estimates was derived using Monte Carlo simulation and compared with the number of ventilation tubes provided in the English National Health Service in 2010. RESULTS: About 32,200 children in England would be expected to benefit from ventilation tubes for otitis media with effusion per year (between 20,411 and 45,231 with 90% certainty). The observed number of ventilation tubes for otitis media with effusion-associated diagnoses was 16,824. CONCLUSIONS: The expected population capacity to benefit from ventilation tubes for otitis media with effusion based on NICE guidance appeared to exceed, by far, the number of ventilation tubes provided in the English National Health Service. So, while there is known 'overuse', there also may be substantial 'underuse' of ventilation tubes for otitis media with effusion if NICE criteria were applied. Future investigations of unwarranted variation should, therefore, not only focus on the patients who are treated but also consider the potential for benefit at the population level.

Disinvestments in practice: overcoming resistance to change through a sociotechnical approach with local stakeholders.

For health care, economists have developed cost-effectiveness analysis (CEA) as a "rational," analytic tool to set priorities. Attempts to use CEA to decide how to cut expenditures, however, have been met with stakeholders' resistance. This article presents an illustrative case study of the application of an approach explicitly designed to engage stakeholders with conflicting objectives in confronting tightening budgets. The outcome of this process, which engaged a group of stakeholders including patients, caregivers, clinicians, and managers, was a strategy that reconfigured services to produce more health gain at reduced total cost. I argue that the key factors that led to overcoming resistance to change were (1) the collective character of the deliberations; (2) the analysis of the whole pathway; (3) the presence of patients; and (4) the development of a model based on CEA principles, which provided a credible rationale for difficult decisions.

Four days later in Cincinnati: longitudinal tests of hyperbolic discounting.

Hyperbolic discounting of delayed rewards has been proposed as an underlying cause of the failure to stick to plans to forego one's immediate desires, such as the plan to diet, wake up early, or quit taking heroin. We conducted two tests of inconsistent planning in which respondents made at least two choices between a smaller-sooner (SS) and larger-later (LL) amount of money, one several weeks before SS would be received, and one immediately before. Hyperbolic discounting predicts that there would be more choices of SS as it became more proximate-and, equivalently, that among those who change their mind, "impatient shifts" (LL-to-SS) will be more common than "patient shifts" (SS-to-LL). We find no evidence for this, however, and in our studies shifts in both directions were equally likely. We propose that some of the evidence cited on behalf of hyperbolic discounting can be attributed to qualitatively different psychological mechanisms.

Modelling the impact on avoidable cardiovascular disease burden and costs of interventions to lower SBP in the England population.

BACKGROUND: The burden of disease from cardiovascular disease (CVD) remains significant in England. Blood pressure remains an important risk factor. Health gain through public health measures and improving treatment compliance are potentially likely to be high. We assess the impact of known cost-effective interventions in terms of the avoidable CVD burden and costs by comparing these strategies to the current situation. METHODS: We modelled avoidable CVD outcomes simulating the English population aged over 16 years with Excel spreadsheets for the current prevention/treatment and following various interventions over a 10-year time frame. The outcome measures were avoidable incident heart disease and stroke events, deaths and disability-adjusted life years (DALYs). Costs are reported from the health service perspective. We analysed relative cost-effectiveness, undertook sensitivity analysis and measured relative impacts of different strategies on avoidable burden of disease. RESULTS: The assessed interventions have a potential to reduce the current burden of disease between 70 000 and about 1 million DALYs over the 10-year frame. Although all interventions were cost-effective, some (e.g. Salt reduction in the population and 'Dietary Approaches to Stop Hypertension-sodium', which modelled the impact of salt reduction and dietary approaches) were cost-saving. The cost-effectiveness of treatment strategies was sensitive to drug costs. CONCLUSION: Evidence-based interventions appropriately scaled up for both prevention and treatment of blood pressure lead to important additional potential health gains. There was noticeable variance in cost-effectiveness and impact among the different interventions at a population level. Taking into account impact, priority should be given to prevention to reduce blood pressure at a population level through reduced salt consumption.

Nuclear risk management on stage: a decision analysis perspective on the UK's Committee on Radioactive Waste Management.

In 2003, the UK government set up a broad-based Committee on radioactive waste management (CoRWM) to look at the UK's policy on radioactive waste management with a view to jumpstarting a stalled policy process. The committee's brief was to come up with a set of recommendations that would protect the public and the environment, and be capable of inspiring public confidence. After consulting widely with the public and stakeholders, and drawing on advice from scientists and other experts, CoRWM arrived at a remarkably well-received set of recommendations. On the basis of our experiences of working on CoRWM's multi-criteria decision analysis of different management options, study of CoRWM documentation, and interviews with committee members, we describe the explicit and implicit principles that guided CoRWM. We also give an account of the process by which CoRWM arrived at its conclusions, covering four phases: framing, shortlisting, option assessment, and integration; and four cross-cutting activities: public and stakeholder engagement (PSE), science and engineering input, ethics and social science input, and learning from overseas practice. We finish by outlining some of the key developments in the UK's radioactive waste management process, which followed on from the publication of CoRWM's report, and present our reflections for the benefit of the risk and decision analysts of future committees that, like CoRWM, are charged with recommending to government on the management of technically complex and risky technologies, drawing on extensive public and stakeholder consultation.

Adjusting life for quality or disability: stylistic difference or substantial dispute?

This paper focuses on the contrast between describing the benefit of a healthcare intervention as gain in health (QALY-type ideas) or a disability reduction (DALY-type ideas). The background is an apparent convergence in practice of the work conducted under both traditions. In the light of these methodological developments, we contrast a health planner who wants to maximise health and one who wants to minimise disability. To isolate the effect of framing the problem from a health or a disability perspective, we do not use age-weighting in calculating DALY and employ a common discounting methodology and the same set of quality of life weights. We find that interventions will be ranked in a systematically different way. The difference, however, is not determined by the use of a health or a disability perspective but by the use of life expectancy tables to determine the years of life lost. We show that this feature of the DALY method is problematic and we suggest its dismissal in favour of a fixed reference age rendering the use of a health or a disability perspective merely stylistic.

Exploring the healthcare journey of patients with rheumatoid arthritis: a mapping project - implications for practice.

OBJECTIVE: Consumers of healthcare can reveal important insights into the personal challenges they experience when negotiating their health needs. The National Rheumatoid Arthritis Society (NRAS) wanted to explore the experiences of those with rheumatoid arthritis (RA) in order to understand the impact on the individual and on healthcare resources and benchmark care against published standards and guidelines. METHODS: A project was designed to explore the experiences of individuals with sero-positive RA who had been diagnosed for three years or less. Qualitative semi-structured interviews were used and combined with process mapping to explore the experiences of a purposeful sample of individuals with RA. The information generated was mapped and variances explored. Ethical approval was not required as the data were collected outside the National Health Service. RESULTS: Twenty-two participants' stories were mapped. Fifty per cent of participants sought a medical opinion within three weeks of symptom onset and the majority received a disease-modifying anti-rheumatic drug within six months from first presenting symptoms. Work-related issues were highlighted by 13 participants, and seven of these experienced job losses directly attributed to their diagnosis. CONCLUSIONS: This unique mapping approach used qualitative research and process mapping to compare patient experiences against recognized standards and guidelines. These twenty-two stories reveal important insights into the challenges experienced in negotiating these healthcare journeys and the impact upon the individual as a result of variances in standards of care received. The participants in this study were chiefly self-motivated, informed and articulate, and did not reflect the broad ethnic, social or cultural diversity in the UK. Limitations must also be considered in relation to perceptions and recall of participants over a three-year period, as these may have altered over time and illness experience.

Requisite models for strategic commissioning: the example of type 1 diabetes.

A developing emphasis of health care reforms has been creating organisations with responsibilities for strategic commissioning of services for defined populations. Such organisations must set priorities in aiming to meet their populations' needs subject to a budget constraint. This requires estimates of the health benefits and costs of different interventions for their populations. This paper outlines a framework that does this and shows how this requires modelling to produce estimates in a way that is transparent to commissioners, of requisite complexity to produce sound estimates for priority setting using routinely available data. The example illustrated in this paper is an intervention that would improve glucose control in the English population with type 1 diabetes. It takes many years for a change in glucose management to deliver maximum benefits; hence the intervention is not good value-for-money in the short run. We aim to give a more strategic view of the costs and benefits modelling costs and benefits in a steady-state model which suggests that the intervention is good value-for-money in the long run.