From each according to means, to each according to needs? Distributional effects of abolishing asset-based payments for residential care in Austria.

BACKGROUND: Most countries in Europe require out-of-pocket payments (OPPs) for nursing homes based on users' income and often assets. This was also the case in Austria until 2018 when asset-based contributions to residential care -denoted the 'Pflegeregress' - were abolished, leaving a shortfall in revenue. We aim to determine how the Pflegeregress was distributed across different groups in Austria prior to 2018, what the distributional consequences of its abolishment were, and what the distributional impact of different financing alternatives would be. METHODS: Circumventing data availability issues, we construct a micro-simulation model using a matched administrative dataset on residential care users receiving the Austrian care allowance (Pflegegeldinformation, PFIF, HVB, and Pflegedienstleistungsstatistik, Statistik Austria) and survey data (SHARE, wave 6). Using this model, we estimate the expected duration of residential care and OPPs under the Pflegeregress of a representative sample of older people aged 65 + in Austria, as well as OPPs under budgetary neutral financing alternatives to the abolished asset-based contribution, namely an inheritance tax and a social insurance scheme. The distributional impact of abolishing the Pflegeregress and these alternative scenarios is assessed through a number of measures, such as ability to pay, Concentration Indices (CI) and a needs-standardized measure. RESULTS: We find that lower income individuals and homeowners disproportionately contributed to asset-based OPPs for residential care prior to 2018, due in large part to their higher use of residential care and the low asset-exemption thresholds. These groups were therefore the largest beneficiaries of its abolishment. The alternative financing scenarios tested would result in a more progressive distribution of payments (i.e. concentrated on more affluent individuals). CONCLUSION: Our findings indicate the limited ability of asset-based OPPs to target those with higher assets, thus questioning the fairness of these instruments for financing residential care facilities for older people in Austria. Findings also suggest that the parameterization of such OPPs (such as asset exemption thresholds) and patterns of residential care use are key variables for assessing the distribution of asset-based OPPs for residential care use. Policy alternatives that decouple payments from use would entail greater transfers from healthy to less healthier individuals.

Development of quality outcome indicators to improve the quality of urinary and faecal continence care.

INTRODUCTION AND HYPOTHESIS: Despite the range of treatment options available, relatively few people with incontinence find a total cure. The importance of daily management with toileting and containment cannot be underestimated. To our knowledge, there are no outcome measures to benchmark good care. The aim of this study was to create a set of key performance indicators (KPIs) to measure outcomes for toileting and containment. METHODS: An expert panel (EP) defined a set of KPIs using evidence from a scoping review, stakeholder engagement, and expert consensus. Peer reviewed articles, high-quality grey literature and international and national standards were reviewed to identify existing measures for management. These findings were augmented by an exercise involving patients, caregivers, nurses, clinicians, payers, policy makers and care providers to prioritise the findings and identify additional areas of interest. RESULTS: The final set of 14 KPIs includes quality indicators of process and outcome for those managed with a toileting and containment strategy and is relevant for both care-independent and -dependent persons. Rates of assessment, days waiting for specialist assessment, rates of return to work and those rating their quality of life as good or acceptable are captured. An indicator of well-being for caregivers and the economic costs of poor care are also defined. CONCLUSIONS: The set of KPIs to measure outcomes from toileting and containment strategies describes the components of each to encourage integration into existing quality frameworks. Each KPI has been refined and detailed to encourage this. If implemented, resulting benchmarking data will facilitate care quality improvement and inform value-based care procurement and provision of toileting and containment strategies.

Continence care for people with dementia living at home in Europe: a review of literature with a focus on problems and challenges.

AIMS AND OBJECTIVES: To report the findings of a review of literature relating to the continence care of community-dwelling people with dementia in Europe. BACKGROUND: More than two-thirds of people with dementia live at home, and many experience continence problems. Incontinence is a significant contributor towards institutionalisation. Care and support is often inadequate or inappropriate, and guidelines are lacking. This represents a failure to respect the human rights and dignity of this group. DESIGN: A structured review of the literature relating to the continence care of community-dwelling people with dementia in Europe with a focus on problems and challenges. METHODS: Search terms reflecting dementia, continence, care/management and guidelines for community-dwelling people with dementia were applied to four databases. Hand-searching was also carried out. A total of 208 articles were searched for content relating to problems and challenges linked to continence care for this group. RESULTS: Six relevant articles were fully reviewed. The main difficulties and challenges included the following: (1) perceptions, (2) availability/provision of support and care, (3) financial cost, (4) mobility and the environment, (5) relationships and social inclusion and (6) emotional issues. CONCLUSION: Dementia and incontinence have profound effects on quality of life. The dearth of good quality data within this area and the findings of the review confirm the need for expert, consensus-based guidelines and appropriate research to ensure that the rights and dignity of people with dementia are respected. RELEVANCE TO CLINICAL PRACTICE: The findings of the review will hopefully raise awareness amongst healthcare professionals in community practice of unmet needs of people with dementia and continence problems, and their caregivers, especially those related to social, financial, emotional and relational issues. The review does not provide solutions or guidance but is helpful in highlighting some of the key areas where special attention is needed.

Disentangling the impact of alternative payment models and associated service delivery models on quality of chronic care: A scoping review.

Payment reforms are frequently implemented alongside service delivery reforms, thus rendering it difficult to disentangle their impact. This scoping review aims to link alternative payment arrangements within their context of service delivery, to assess their impact on quality of chronic care, and to disentangle, where possible, the impact of payment reforms from changes to service delivery. A search of literature published between 2013 and 2022 resulted in 34 relevant articles across five types of payment models: capitation/global budget (n = 13), pay-for-coordination (n = 10), shared savings/shared risk (n = 6), blended capitation (n = 3), and bundled payments (n = 1). The certainty of evidence was generally low due to biases associated with voluntary participation in reforms. This scoping review finds that population-based payment reforms are better suited for collaborative, person-centred approaches of service delivery spanning settings and providers, but also highlights the need for a wider evidence base of studies disentangling the impact of financing from service delivery reforms. Limited evidence disentangling the two suggests that transforming service delivery to a team-based model of care alongside a purchasing reform shifting to blended capitation was more impactful in improving quality of chronic care, than the individual components of payment and service delivery. Further comparative studies employing causal inference methods, accounting for biases and quantifying aspects of service delivery, are needed to better disentangle the mechanisms impacting quality of care.

Exploring improvement plans of fourteen European integrated care sites for older people with complex needs.

Integrated care programmes are increasingly being put in place to provide care to older people living at home. However, knowledge about further improving integrated care is limited. In fourteen integrated care sites in Europe, plans to improve existing ways of working were designed, implemented and evaluated to enlarge the understanding of what works and with what outcomes when improving integrated care. This paper provides insight into the existing ways that the sites were working with respect to integrated care, their perceived difficulties and their plans for working towards improvement. The seven components of the Expanded Chronic Care Model provided a conceptual framework for describing the fourteen sites. Although sites were spread across Europe and differed in basic characteristics and existing ways of working, a number of difficulties in delivering integrated care were similar. Existing ways of working and improvement plans mostly focused on three components of the Expanded Chronic Care Model: delivery system design; decision support; self-management. Two components were represented less frequently in existing ways of working and improvement plans: building healthy public policy; building community capacity. These findings suggest that broadly-based prevention efforts, population health promotion and community involvement remain limited. From the Expanded Chronic Care Model perspective, therefore, opportunities for improving integrated care outcomes may continue to be restricted by the narrow focus of developed improvement plans.

The SUSTAIN Project: A European Study on Improving Integrated Care for Older People Living at Home.

INTRODUCTION: Integrated care programmes are increasingly being put in place to provide care to older people who live at home. Knowledge of how to further develop integrated care and how to transfer successful initiatives to other contexts is still limited. Therefore, a cross-European research project, called Sustainable Tailored Integrated Care for Older People in Europe (SUSTAIN), has been initiated with a twofold objective: 1. to collaborate with local stakeholders to support and monitor improvements to established integrated care initiatives for older people with multiple health and social care needs. Improvements focus on person-centredness, prevention orientation, safety and efficiency; 2. to make these improvements applicable and adaptable to other health and social care systems, and regions in Europe. This paper presents the overall structure and approach of the SUSTAIN project. METHODS: SUSTAIN uses a multiple embedded case study design. In three phases, SUSTAIN partners: (i) conduct interviews and workshops with stakeholders from fourteen established integrated care initiatives to understand where they would prefer improvements to existing ways of working; (ii) collaborate with local stakeholders to support the design and implementation of improvement plans, evaluate implementation progress and outcomes per initiative, and carry out overarching analyses to compare the different initiatives, and; (iii) translate knowledge and experience to an online roadmap. DISCUSSION: SUSTAIN aims to generate evidence on how to improve integrated care, and apply and transfer the knowledge gained to other health and social care systems, and regions. Lessons learned will be brought together in practical tools to inform and support policy-makers and decision-makers, as well as other stakeholders involved in integrated care, to manage and improve care for older people living at home.

Methodological development of the interactive INTERLINKS Framework for Long-term Care.

There is increasing international research into health and social care services for older people in need of long-term care (LTC), but problems remain with respect to acquiring robust comparative information to enable judgements to be made regarding the most beneficial and cost-effective approaches. The project 'INTERLINKS' ('Health systems and LTC for older people in Europe') funded by the EU 7th Framework programme was developed to address the challenges associated with the accumulation and comparison of evidence in LTC across Europe. It developed a concept and method to describe and analyse LTC and its links with the health and social care system through the accumulation of policy and practice examples on an interactive web-based framework for LTC. This paper provides a critical overview of the theoretical and methodological approaches used to develop and implement the INTERLINKS Framework for LTC, with the aim of providing some guidance to researchers in this area. INTERLINKS has made a significant contribution to knowledge but robust evidence and comparability across European countries remain problematic due to the current and growing complexity and diversity of integrated LTC implementation.

The public gets what the public wants: experiences of public reporting in long-term care in Europe.

INTRODUCTION: Public reporting of quality in long-term care is advocated on the basis of allowing providers to improve their performance by benchmarking and supporting users to choose the best providers. Both mechanisms are intended to drive improvements in quality. However, there is relatively scarce comparative research on the experiences and impact of public reporting on quality in long-term care in Europe. METHODS: Using information gathered from key informants by means of a structured questionnaire and country profiles, this paper discusses experiences with public reporting mechanisms in seven European countries and available information on their impact on quality in long-term care. RESULTS: Countries surveyed included a variety of public reporting schemes, ranging from pilot programmes to statutory mechanisms. Public reporting mechanisms more often focus on institutional care. Inspections carried out as part of a legal quality assurance framework are the main source of information gathering, supplemented by provider self-assessments in the context of internal quality management and user satisfaction surveys. Information on quality goes well beyond structural indicators to also include indicators on quality of life of users. Information is displayed using numerical scores (percentages), but also measures such as ratings (similar to school grades) and ticks and crosses. Only one country corrects for case-mix. The internet is the preferred medium of displaying information. DISCUSSION: There was little evidence to show whether public reporting has a significant impact on driving users' choices of provider. Studies reported low awareness of quality indicators among potential end users and information was not always displayed in a convenient format, e.g. through complicated numerical scores. There is scarce evidence of public reporting directly causing improved quality, although the relative youth and the pilot characteristics of some of the schemes covered here could also have contributed to downplay their impact. The establishment of public reporting mechanisms did however contribute to shaping the discussion on quality measurement in several of the countries surveyed. CONCLUSIONS: The findings presented in this paper highlight the need to consider some factors in the discussion of the impact of public reporting in long-term care, namely, the organisation of care markets, frequently characterised by limited competition; the circumstances under which user choice takes place, often made under conditions of duress; and the leadership conditions needed to bring about improvements in quality in different care settings.

Developing an internationally-applicable service specification for continence care: systematic review, evidence synthesis and expert consensus.

BACKGROUND: Global demographic trends suggest that the incidence of both urinary and faecal incontinence will rise in the coming years, bringing significant health and economic implications for both patients and payers. There is limited organisational evidence to guide payers and providers about service configuration which will deliver efficient guideline-compliant, high-quality patient care. OBJECTIVES: To create, using evidence from a systematic review, qualitative data and expert consensus an internationally applicable service specification for continence care. METHOD: Evidence was obtained from a systematic and grey literature review of published randomised controlled trials and quasi-experimental studies reporting efficacy of continence service design at the level of the community dwelling patient with either bladder or bowel incontinence, governmental reports and policy frameworks supplemented by data from 47 semi-structured interviews with clinicians, patients, patient-representatives and policy experts from four geographies broadly representative of different healthcare systems. RESULTS: A number of themes related to current and potential future organisation of continence care were identified from the data. A modular service specification with eight core components was created including case detection, initial assessment and treatment, case co-ordination, caregiver support, community-based support, specialist assessment and treatment, use of containment products, and use of technology. Within this framework important key recommendations are: ensure robust referral pathways, shift assessment for case coordination to nurses specializing in continence care, promote self-management and technology, use comprehensive assessment tools and service performance targets based on outcome and operational measures. CONCLUSIONS: This study has defined practice gaps in the provision of continence services and described eight core components of a service specification for incontinence that commissioners and payers of health and social care could consider using to provide high-quality continence care. A shift towards a community-delivered, nurse-led model appears to be associated with clinical and cost-effective care for people with bladder and bowel incontinence.

Integrated care for older people in Europe-latest trends and perceptions.

As a researcher and consultant I have coordinated local pilots and European research projects to analyse and improve long-term care for older people by better integrating health and social care systems. One of my conclusions from the wide range of initiatives that have been taken over the past two decades in Europe has been the need to treat long-term care as a system in its own right. Long-term care systems require a discernable identity; specific policies, structures, processes and pathways; and the leadership and resources that can underpin expectations, drive performance and achieve better outcomes for people that are living with (and working for those with) long-term care needs. Progress in developing LTC systems can be identified today in all European countries. Integrated care solutions at the interface between health and social care, and between formal and informal care, have appeared. These have been achieved partly by means of (slow) political reforms, partly as a response to market-oriented governance, and in many cases through pioneering community and civil society initiatives. It will depend on such initiatives, and their ability to convince both citizens and policy-makers, whether new societal approaches to long-term care are created that meet the demands of ageing societies.

Developing integrated health and social care services for older persons in Europe.

PURPOSE: This paper is to distribute first results of the EU Fifth Framework Project 'Providing integrated health and social care for older persons-issues, problems and solutions' (PROCARE-http://www.euro.centre.org/procare/). The project's first phase was to identify different approaches to integration as well as structural, organisational, economic and social-cultural factors and actors that constitute integrated and sustainable care systems. It also served to retrieve a number of experiences, model ways of working and demonstration projects in the participating countries which are currently being analysed in order to learn from success-or failure-and to develop policy recommendations for the local, national and European level. THEORY: The paper draws on existing definitions of integrated care in various countries and by various scholars. Given the context of an international comparative study it tries to avoid providing a single, ready-made definition but underlines the role of social care as part and parcel of this type of integrated care in the participating countries. METHODS: The paper is based on national reports from researchers representing ten organisations (university institutes, consultancy firms, research institutes, the public and the NGO sector) from 9 European countries: Austria, Denmark, Finland, France, Germany, Greece, Italy, the Netherlands, and the UK. Literature reviews made intensive use of grey literature and evaluation studies in the context of at least five model ways of working in each country. RESULTS: As a result of the cross-national overview an attempt to classify different approaches and definitions is made and indicators of relative importance of the different instruments used in integrating health and social care services are provided. CONCLUSIONS: The cross-national overview shows that issues concerning co-ordination and integration of services are high on the agenda in most countries. Depending on the state of service development, various approaches and instruments can be observed. Different national frameworks, in particular with respect to financing and organisation, systemic development, professionalisation and professional cultures, basic societal values (family ethics), and political approaches have to be taken into account during the second phase of PROCARE during which transversal and transnational analysis will be undertaken based on an in-depth analysis of two model ways of working in each country. DISCUSSION: Far from a European vision concerning integrated care, national health and social care systems remain-at best-loosely coupled systems that are facing increasing difficulties, given the current challenges, in particular in long-term care for older persons: increasing marketisation, lack of managerial knowledge (co-operation, co-ordination), shortage of care workers and a general trend towards down-sizing of social care services continue to hamper the first tentative pathways towards integrated care systems.