Assessing the experience of person-centred coordinated care of people with chronic conditions in the Netherlands: Validation of the Dutch P3CEQ.

BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

Addressing safety risks in integrated care programs for older people living at home: a scoping review.

BACKGROUND: Many older people live at home, often with complex and chronic health and social care needs. Integrated care programs are increasingly being implemented as a way to better address these needs. To support older people living at home, it is also essential to maintain their safety. Integrated care programs have the potential to address a wide range of risks and problems that could undermine older people's ability to live independently at home. The aim of this scoping review is to provide insight into how integrated care programs address safety risks faced by older people living at home - an area that is rather underexplored. METHODS: Safety was conceptualised as preventing or reducing the risk of problems, associated with individual functioning and behaviour, social and physical environments, and health and social care management, which could undermine older people's ability to live independently at home. For this scoping review a systematic literature search was performed to identify papers describing integrated care programs where at least one intervention component addressed safety risks. Data were extracted on the programs' characteristics, safety risks addressed, and the activities and interventions used to address them. RESULTS: None of the 11 programs included in this review explicitly mentioned safety in their goals. Nevertheless, following the principles of our conceptual framework, the programs appeared to address risks in multiple domains. Most attention was paid to risks related to older people's functioning, behaviour, and the health and social care they receive. Risks related to people's physical and social environments received less attention. CONCLUSION: Even though prevention of safety risks is not an explicit goal of integrated care programs, the programs address a wide range of risks on multiple domains. The need to address social and environmental risks is becoming increasingly important given the growing number of people receiving care and support at home. Prioritising a multidimensional approach to safety in integrated care programs could enhance the ability of health and social care systems to support older people to live safely at home.

Improving early detection initiatives: a qualitative study exploring perspectives of older people and professionals.

BACKGROUND: A wide range of initiatives on early detection and intervention have been developed to proactively identify problems related to health and wellbeing in (frail) older people, with the aim of supporting them to live independently for as long as possible. Nevertheless, it remains unclear what the best way is to design such initiatives and how older people's needs and preferences can be best addressed. This study aimed to address this gap in the literature by exploring: 1) older people's perspectives on health and living environment in relation to living independently at home; 2) older people's needs and preferences in relation to initiating and receiving care and support; and 3) professionals' views on what would be necessary to enable the alignment of early detection initiatives with older people's own needs and preferences. METHODS: In this qualitative study, we conducted semi-structured interviews with 36 older people and 19 professionals in proactive elderly care. Data were analysed using the framework analysis method. RESULTS: From the interviews with older people important themes in relation to health and living environment emerged, such as maintaining independence, appropriate housing, social relationships, a supporting network and a sense of purpose and autonomy. Older people preferred to remain self-sufficient, and they would rather not ask for help for psychological or social problems. However, the interviews also highlighted that they were not always able or willing to anticipate future needs, which can hinder early detection or early intervention. At the same time, professionals indicated that older people tend to over-estimate their self-reliance and therefore advocated for early detection and intervention, including social and psychological issues. CONCLUSION: Older people have a broad range of needs in different domains of life. Discrepancies exist between older people and professionals with regard to their views on timing and scope of early detection initiatives. This study aimed to reveal starting-points for better alignment between initiatives and older people's needs and preferences. Such starting points may support policy makers and care professionals involved in early detection initiatives to make more informed decisions.

A four-domain approach of frailty explored in the Doetinchem Cohort Study.

BACKGROUND: Accumulation of problems in physical, psychological, cognitive, or social functioning is characteristic for frail individuals. Using a four-domain approach of frailty, this study explored how sociodemographic and lifestyle factors, life events and health are associated with frailty. METHODS: The study sample included 4019 men and women (aged 40-81 years) examined during the fifth round (2008-2012) of the Doetinchem Cohort Study. Four domains of frailty were considered: physical (≥4 of 8 criteria: unintentional weight loss, exhaustion, strength, perceived health, walking, balance, hearing and vision impairments), psychological (2 criteria: depressive symptoms, mental health), cognitive (<10th percentile on global cognitive functioning), and social frailty (≥2 of 3 criteria: loneliness, social support, social participation). Logistic regression was used to study the cross-sectional association of sociodemographic factors, lifestyle, life events and chronic diseases with frailty domains. RESULTS: About 17% of the population was frail on one or more domains. Overlap between the frailty domains was limited since 82% of the frail population was frail on one domain only. Low educated respondents were at higher risk of being psychologically and socially frail. Having multiple diseases was associated with a higher risk of being physically and psychologically frail. Being physically active was consistently associated with a lower risk of frailty on each of the four domains. Short or long sleep duration was associated with a higher risk of being physically, psychologically, and socially frail. CONCLUSIONS: Sociodemographic factors, lifestyle and multimorbidity contributed differently to the four frailty domains. It is important to consider multiple frailty domains since this helps to identify different groups of frail people, and as such to provide tailored care and support. Lifestyle factors including physical activity, smoking and sleep duration were associated with multiple domains of frailty.

Initiatives on early detection and intervention to proactively identify health and social problems in older people: experiences from the Netherlands.

BACKGROUND: Over the last years, several initiatives on early detection and intervention have been put in place to proactively identify health and social problems in (frail) older people. An overview of the initiatives currently available in the Netherlands is lacking, and it is unknown whether they meet the preferences and needs of older people. Therefore, the objectives of this study were threefold: 1. To identify initiatives on early detection and intervention for older people in the Netherlands and compare their characteristics; 2. To explore the experiences of professionals with these initiatives; and 3. To explore to what extent existing initiatives meet the preferences and needs of older people. METHODS: We performed a qualitative descriptive study in which we conducted semi-structured interviews with seventeen experts in preventive elderly care and three group interviews with volunteer elderly advisors. Data were analysed using the framework analysis method. RESULTS: We identified eight categories of initiatives based on the setting (e.g. general practitioner practice, hospital, municipality) in which they were offered. Initiatives differed in their aims and target groups. The utilization of peers to identify problems and risks, as was done by some initiatives, was seen as a strength. Difficulties were experienced with identifying the target group that would benefit from proactive delivery of care and support most, and with addressing prevalent issues among older people (e.g. psychosocial issues, self-reliance issues). CONCLUSION: Although there is a broad array of initiatives available, there is a discrepancy between supply and demand. Current initiatives insufficiently address needs of (frail) older people. More insight is needed in "what should be done by whom, for which target group and at what moment", in order to improve current practice in preventive elderly care.

Safety risks among frail older people living at home in the Netherlands - A cross-sectional study in a routine primary care sample.

Frail older people face a range of problems and risks that could undermine their ability to live safely at home. A comprehensive overview of these risks, from a multidimensional perspective, is currently lacking. This study aims to examine the prevalence of risks in multiple domains of life among frail older people living at home. We used cross-sectional data from 824 people aged 65 years and older, who received a comprehensive geriatric assessment (the interRAI Home Care [interRAI-HC]) between 2014 and 2018, as part of routine care from 25 general practices in the region of West-Friesland, the Netherlands. The interRAI-HC identifies amenable risks related to people's clinical conditions, functioning, lifestyle and behaviour, and social and physical environment. Descriptive statistics were used to examine population characteristics (age, gender, marital status, living arrangements and presence of chronic conditions) and prevalence of risks. Most common risks were related to people's clinical conditions (i.e cardio-respiratory health, urinary incontinence, pain), functioning (i.e. limitations in instrumental activities of daily living and mood) and social environment (i.e. limitations in informal care and social functioning). More than 80% of frail older people faced multiple risks, and often on multiple domains of life simultaneously. People experiencing multiple risks per person, and on multiple domains simultaneously, were more often widowed and living alone. The multidimensional character of risks among frail older people living at home implies that an integrated approach to care, comprising both health and social care, is necessary. Insight in the prevalence of these risks can give direction to care allocation decisions.

Exploring the Team Climate of Health and Social Care Professionals Implementing Integrated Care for Older People in Europe.

BACKGROUND AND PROBLEM STATEMENT: Team climate describes shared perceptions of organisational policies, practices and procedures. A positive team climate has been linked to better interprofessional collaboration and quality of care. Most studies examine team climate within health or social care organisations. This study uniquely explores the team climate of integrated health and social care teams implementing integrated care initiatives for older people in thirteen sites across seven European countries, and examines the factors which contribute to the development of team climate. THEORY AND METHODS: In a multiple case study design, data collected as part of the European SUSTAIN (Sustainable Tailored Integrated Care for Older People in Europe) project were analysed. The short-form Team Climate Inventory (TCI-14) was administered before and after implementation of the integrated care initiatives. Qualitative data was used to explain the changes in TCI-14 scores over time. RESULTS AND DISCUSSION: Overall, team climate was found to be high and increased over time in eight of the thirteen sites. The development of a shared vision was associated with a strong belief in the value and feasibility of the initiative, clear roles and responsibilities, and a reflective approach. Strong inter-personal relationships, shared decision-making, and high levels of commitment and motivation contributed to the development of participative safety. Support for innovation increased when staff had the 'space' and time to work together. CONCLUSION: This mixed methods study offers significant insights into the development and maintenance of team climate in complex, integrated care systems in Europe.

Unknown makes unloved-A case study on improving integrated health and social care in the Netherlands using a participatory approach.

Many initiatives integrating health and social care have been implemented in order to provide adequate care and support to older people living at home. Further development of existing initiatives requires iterative processes of developing, implementing and evaluating improvements to current practice. This case study provides insight into the process of improving an existing integrated care initiative in the Netherlands. Using a participatory approach, researchers and local stakeholders collaborated to develop and implement activities to further improve collaboration between health and social care professionals. Improvement activities included interprofessional meetings focussing on reflection and mutual learning and workplace visits. Researchers evaluated the improvement process, using data triangulation of multiple qualitative and quantitative data sources. According to participating professionals, the improvement activities improved their communication and collaboration by establishing mutual understanding and trust. Enabling factors included the safe and informal setting in which the meetings took place and the personal relationships they developed during the project. Different organisational cultures and interests and a lack of ownership and accountability among managers hindered the improvement process, whereas issues such as staff shortages, time constraints and privacy regulations made it difficult to implement improvements on a larger scale. Still, the participatory approach encouraged the development of partnerships and shared goals on the level of both managers and professionals. This case study highlights that improving communication between professionals is an important first step in improving integrated care. In addition, it shows that a participatory approach, in which improvements are co-created and tailored to local priorities and needs, can help in the development of shared goals and trust between stakeholders with different perspectives. However, stakeholders' willingness and ability to participate in such an improvement process is challenged by many factors.

Supporting Older People to Live Safely at Home - Findings from Thirteen Case Studies on Integrated Care Across Europe.

INTRODUCTION: While many different factors can undermine older people's ability to live safely at home, safety as an explicit aspect of integrated care for older people living at home is an underexplored topic in research. In the context of a European project on integrated care, this study aims to improve our understanding of how safety is addressed in integrated care practices across Europe. METHODS: This multiple case study included thirteen integrated care sites from seven European countries. The Framework Method guided content analyses of the case study reports. Activities were clustered into activities aimed at identifying and managing risks, or activities addressing specific risks related to older people's functioning, behaviour, social environment, physical environment and health and social care receipt. RESULTS: Case studies included a broad range of activities addressing older people's safety. Although care providers felt they sufficiently addressed safety issues, older people were often concerned and insecure about their safety. Attention to the practical and social aspects of safety was often insufficient. CONCLUSIONS AND DISCUSSION: Integrated care services across Europe address older people's safety in many ways. Further integration of health and social care solutions is necessary to enhance older people's perceptions of safety.

Improving Person-Centredness in Integrated Care for Older People: Experiences from Thirteen Integrated Care Sites in Europe.

INTRODUCTION: Although person-centredness is a key principle of integrated care, successfully embedding and improving person-centred care for older people remains a challenge. In the context of a cross-European project on integrated care for older people living at home, the objective of this paper is to provide insight at an overarching level, into activities aimed at improving person-centredness within the participating integrated care sites. The paper describes experiences with these activities from the service providers' and service users' perspectives. METHODS: A multiple embedded case study design was conducted that included thirteen integrated care sites for older people living at home. RESULTS: Service providers were positive about the activities that aimed to promote person-centred care and thought that most activities (e.g. comprehensive needs assessment) positively influenced person-centredness. Experiences of service users were mixed. For some activities (e.g. enablement services), discrepancies were identified between the views of service providers and those of service users. DISCUSSION AND CONCLUSION: Evaluating activities aimed at promoting person-centredness from both the service providers' and service users' perspectives showed that not all efforts were successful or had the intended consequences for older people. Involvement of older people in designing improvement activities could ensure that care and support reflect their needs and preferences, and build positive experiences of care and support.

Assigning a Prominent Role to "The Patient Experience" in Assessing the Quality of Integrated Care for Populations with Multiple Chronic Conditions.

In response to growing populations of citizens with multiple chronic conditions, integrated care models are being implemented in many countries. Based on our experiences from three EU co-funded actions (ICARE4EU, SUSTAIN, JA-CHRODIS), we notice that users' experiences are not always taken into account when assessing the quality of integrated care, whereas research shows that it is in this particular domain that quality improvement is most evident. The greatest value of integrated care for people with multiple chronic conditions may not lie in its potential to improve their health or reduce their use of services, but in its potential to improve their care experience, by strengthening person-centred decision-making and delivering care and support accordingly. Collaborations of care providers, (representatives of) people with multiple chronic conditions and researchers need to develop appropriate methods and measures to include users' experiences in quality assessment of integrated care.

Comprehensive geriatric assessments in integrated care programs for older people living at home: A scoping review.

In many integrated care programs, a comprehensive geriatric assessment (CGA) is conducted to identify older people's problems and care needs. Different ways for conducting a CGA are in place. However, it is still unclear which CGA instruments and procedures for conducting them are used in integrated care programs, and what distinguishes them from each other. Furthermore, it is yet unknown how and to what extent CGAs, as a component of integrated care programs, actually reflect the main principles of integrated care, being comprehensiveness, multidisciplinarity and person-centredness. Therefore, the objectives of this study were to: (a) describe and compare different CGA instruments and procedures conducted within integrated care programs for older people living at home, and (b) describe how the principles of integrated care were applied in these CGAs. A scoping review of the scientific literature on CGAs in the context of integrated care was conducted for the period 2006-2018. Data were extracted on main characteristics of the identified CGA instruments and procedures, and on how principles of integrated care were applied in these CGAs. Twenty-seven integrated care programs were included in this study, of which most were implemented in the Netherlands and the United States. Twenty-one different CGAs were identified, of which the EASYcare instrument, RAI-HC/RAI-CHA and GRACE tool were used in multiple programs. The majority of CGAs seemed to reflect comprehensiveness, multidisciplinarity and person-centredness, although the way and extent to which principles of integrated care were incorporated differed between the CGAs. This study highlights the high variability of CGA instruments and procedures used in integrated care programs. This overview of available CGAs and their characteristics may promote (inter-)national exchange of CGAs, which could enable researchers and professionals in choosing from the wide range of existing CGAs, thereby preventing them from unnecessarily reinventing the wheel.

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.