Data analysis plan of the OECD PaRIS survey: leveraging a multi-level approach to analyse data collected from people living with chronic conditions and their primary care practices in 20 countries.

OBJECTIVE: In view of the increasing number of people with (multiple) chronic conditions, the Organisation for Economic Co-operation and Development (OECD) initiated the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in patient-reported outcomes and experiences of chronic care provided by primary care practices to support policy development. The objective of this research note is to describe the structure of the data, collected in the PaRIS survey and how the data will be analysed in a multilevel approach for cross-country comparison. ANALYSIS PLAN: The data structure of the PaRIS survey represents three levels: countries/health systems, primary care practices and patients. Multilevel analysis is used because of its accuracy in estimating country-level outcomes, its flexibility in modelling relationships, and its opportunities in connecting to relevant policy questions. Country-level outcomes will be estimated to facilitate cross-country comparison and (future) within-country comparison over time. Characteristics of patients that potentially explain variation in patient-reported outcomes and experiences can be linked to primary care practice and country/health system characteristics. This makes it possible to address policy-relevant questions relating, e.g., to the impact of chronic care management on patients with a specific chronic condition.

International cross-cultural development and field testing of the primary care practice questionnaire for the PaRIS survey (PaRIS-PCPQ).

BACKGROUND: The PaRIS survey, an initiative of the Organisation for Economic Co-operation and Development (OECD), aims to assess health systems performance in delivering primary care by measuring the care experiences and outcomes of people over 45 who used primary care services in the past six months. In addition, linked data from primary care practices are collected to analyse how the organisation of primary care practices and their care processes impact care experiences and outcomes. This article describes the development and validation of the primary care practice questionnaire for the PaRIS survey, the PaRIS-PCPQ. METHOD: The PaRIS-PCPQ was developed based on domains of primary care practice and professional characteristics included in the PaRIS conceptual framework. Questionnaire development was conducted in four phases: (1) a multi-step consensus-based development of the source questionnaire, (2) translation of the English source questionnaire into 17 languages, (3) cross-national cognitive testing with primary care professionals in participating countries, and (4) cross-national field-testing. RESULTS: 70 items were selected from 7 existing questionnaires on primary care characteristics, of which 49 were included in a first draft. Feedback from stakeholders resulted in a modified 34-item version (practice profile, care coordination, chronic care management, patient follow-up, and respondent characteristics) designed to be completed online by medical or non-medical staff working in a primary care practice. Cognitive testing led to changes in the source questionnaire as well as to country specific localisations. The resulting 32-item questionnaire was piloted in an online survey and field test. Data from 540 primary care practices from 17 countries were collected and analysed. Final revision resulted in a 34-item questionnaire. CONCLUSIONS: The cross-national development of a primary care practice questionnaire is challenging due to the differences in care delivery systems. Rigorous translation and cognitive testing as well as stakeholder engagement helped to overcome most challenges. The PaRIS-PCPQ will be used to assess how key characteristics of primary care practices relate to the care experiences and outcomes of people living with chronic conditions. As such, policymakers and care providers will be informed about the performance of primary care from the patient's perspective.

Are older people worse off in 2040 regarding health and resources to deal with it? - Future developments in complex health problems and in the availability of resources to manage health problems in the Netherlands.

Introduction: Developing sustainable health policy requires an understanding of the future demand for health and social care. We explored the characteristics of the 65+ population in the Netherlands in 2020 and 2040, focusing on two factors that determine care needs: (1) the occurrence of complex health problems and (2) the availability of resources to manage health and care (e.g., health literacy, social support). Methods: Estimations of the occurrence of complex health problems and the availability of resources for 2020 were based on registry data and patient-reported data. Estimations for 2040 were based on (a) expected demographic developments, and (b) expert opinions using a two-stage Delphi study with 26 experts from policy making, practice and research in the field of health and social care. Results: The proportion of people aged 65+ with complex health problems and limited resources is expected to increase from 10% in 2020 to 12% in 2040 based on demographic developments, and to 22% in 2040 based on expert opinions. There was high consensus (>80%) that the proportion with complex health problems would be greater in 2040, and lower consensus (50%) on an increase of the proportion of those with limited resources. Developments that are expected to drive the future changes refer to changes in multimorbidity and in psychosocial status (e.g., more loneliness). Conclusion: The expected increased proportion of people aged 65+ with complex health problems and limited resources together with the expected health and social care workforce shortages represent large challenges for public health and social care policy.

Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol.

INTRODUCTION: Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries. METHODS AND ANALYSIS: In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis. ETHICS AND DISSEMINATION: This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Intervention in other countries. This Replication Manual will become freely available through PanCare and will be disseminated through policy and press releases. TRIAL REGISTRATION NUMBER: Netherlands Trial Register (NL8918; https://www.trialregister.nl/trial/8918).

Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey).

INTRODUCTION: In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey. METHODS AND ANALYSIS: As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023. ETHICS AND DISSEMINATION: Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.

Costs of multimorbidity: a systematic review and meta-analyses.

BACKGROUND: Multimorbidity is a rising global phenomenon, placing strains on countries' population health and finances. This systematic review provides insight into the costs of multimorbidity through addressing the following primary and secondary research questions: What evidence exists on the costs of multimorbidity? How do costs of specific disease combinations vary across countries? How do multimorbidity costs vary across disease combinations? What "cost ingredients" are most commonly included in these multimorbidity studies? METHODS: We conducted a systematic review (PROSPERO: CRD42020204871) of studies published from January 2010 to January 2022, which reported on costs associated with combinations of at least two specified conditions. Systematic string-based searches were conducted in MEDLINE, The Cochrane Library, SCOPUS, Global Health, Web of Science, and Business Source Complete. We explored the association between costs of multimorbidity and country Gross Domestic Product (GDP) per capita using a linear mixed model with random intercept. Annual mean direct medical costs per capita were pooled in fixed-effects meta-analyses for each of the frequently reported dyads. Costs are reported in 2021 International Dollars (I$). RESULTS: Fifty-nine studies were included in the review, the majority of which were from high-income countries, particularly the United States. (1) Reported annual costs of multimorbidity per person ranged from I$800 to I$150,000, depending on disease combination, country, cost ingredients, and other study characteristics. (2) Our results further demonstrated that increased country GDP per capita was associated with higher costs of multimorbidity. (3) Meta-analyses of 15 studies showed that on average, dyads which featured Hypertension were among the least expensive to manage, with the most expensive dyads being Respiratory and Mental Health condition (I$36,840), Diabetes and Heart/vascular condition (I$37,090), and Cancer and Mental Health condition in the first year after cancer diagnosis (I$85,820). (4) Most studies reported only direct medical costs, such as costs of hospitalization, outpatient care, emergency care, and drugs. CONCLUSIONS: Multimorbidity imposes a large economic burden on both the health system and society, most notably for patients with cancer and mental health condition in the first year after cancer diagnosis. Whether the cost of a disease combination is more or less than the additive costs of the component diseases needs to be further explored. Multimorbidity costing studies typically consider only a limited number of disease combinations, and few have been conducted in low- and middle-income countries and Europe. Rigorous and standardized methods of data collection and costing for multimorbidity should be developed to provide more comprehensive and comparable evidence for the costs of multimorbidity.

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.

Measuring Older Peoples' Experiences of Person-Centred Coordinated Care: Experience and Methodological Reflections from Applying a Patient Reported Experience Measure in SUSTAIN.

INTRODUCTION: While several evaluation studies on (cost-)effectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users. In the context of a European project on integrated care for older people living at home (SUSTAIN), this paper shares the experience and methodological reflections from applying a Patient Reported Experience Measure (PREM) on person-centred coordinated care -the P3CEQ- among this population. METHODS: A combination of quantitative and qualitative data and analysis methods was used to assess the usability and the quality of applying a PREM among older people presenting complex care needs, using the P3CEQ delivery in SUSTAIN as a case study. 228 service users completed the P3CEQ and nine SUSTAIN researchers participated in a consultation about their experience administering the questionnaire. P3CEQ scores were analysed quantitatively using principal component analysis and multilevel linear regression. P3CEQ open responses and researcher notes collected when administering the questionnaire were thematically analysed. RESULTS: Service user inclusion was high and most P3CEQ items had low non-response rates. Quantitative analysis and researcher experience indicate the relevance of face-to-face administration for obtaining such an amount of data in this population group. The presence of a carer increased inclusion of more vulnerable respondents, such as the cognitively impaired, but posed a challenge in data interpretation. Although several P3CEQ items were generally understood as intended by questionnaire developers, the analysis of open responses highlights how questions can lead to diverging and sometimes narrow interpretations by respondents. Cognitive impairment and a higher educational attainment were associated with lower levels of perceived person-centredness of care. CONCLUSION: This study shows essential preconditions to meaningfully collect and analyse PREM data on older peoples' experiences with integrated care: face-to-face administration away from care providers, collection of reasons for non-response and open comments providing nuances to answers, and multilevel modelling taking into account diversity in the target population. Several areas of improvement for future PREM use in this population have been identified: use of administration and coding guides, inclusion of clear and easy to understand definitions and examples illustrating what questions do and do not mean, measures of the expectations of person-centred coordinated care, and procedures ensuring sound ethical research. These methodological learnings can enhance future evaluation of integrated care from a service user perspective.

The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers.

BACKGROUND: The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. METHODS: The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. RESULTS: Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. CONCLUSIONS: The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Priorities and preferences for care of people with multiple chronic conditions.

BACKGROUND: To guide the development of high-quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. AIM: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. PARTICIPANTS AND METHODS: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. RESULTS: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self-management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). CONCLUSION: The JA-CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person-centred integrated care for people with multiple chronic conditions in the Netherlands. PATIENT CONTRIBUTION: European patient experts contributed to the development and applicability assessment of the JA-CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey.

Identifying multimorbid patients with high care needs - A study based on electronic medical record data.

BACKGROUND: Patients with multimorbidity who frequently contact the general practice, use emergency care or have unplanned hospitalisations, may benefit from a proactive integrated care intervention. General practitioners are not always aware of who these 'high need' patients are. Electronic medical records are a potential source to identify them. OBJECTIVES: To find predictors of high care needs in general practice electronic medical records of patients with multimorbidity and assess their predictive value. METHODS: General practice electronic medical records of 245,065 patients with ≥2 chronic diseases were linked to hospital claims data. Probit regression analysis was conducted to predict i) having at least 12 general practice contacts per year, ii) emergency department visit(s), and iii) unplanned hospitalisation(s). Predictors were patients' age, sex, morbidity, health services and medication use in the previous year. RESULTS: 11% of multimorbid patients had ≥12 general practice contacts, which could be reliably predicted by the number of contacts in the previous year (PPV 42%). The model containing all predictors had only slightly better predictive value (PPV 44%). Emergency department visits and unplanned hospitalisations (12% and 7% of multimorbid patients, respectively) could be predicted less accurately (PPV 27% and 20%). Those with frequent contact with the general practice hardly overlapped with ED visitors (29%) or persons with unplanned hospitalisations (17%). CONCLUSION: Among multimorbid populations various 'high need' groups exist. Patients with high needs for general practice care can be identified by their previous use of general practice care. To identify frequent ED visitors and persons with unplanned hospitalisations, additional information is needed.

Towards a comprehensive, person-centred assessment of health literacy: translation, cultural adaptation and psychometric test of the Dutch Health Literacy Questionnaire.

BACKGROUND: Many health literacy instruments focus on reading skills, numeracy and/or information processing aspects only. In the Netherlands, as in other countries, the need for a comprehensive, person-centred measure of health literacy was observed and consequently the decision was made to translate the Health Literacy Questionnaire (HLQ) into Dutch. The HLQ has nine health literacy domains covering people's experiences and skills. This research sought to translate, culturally adapt and psychometrically test the HLQ. METHODS: The translation and adaptation was done using a systematic approach with forward translation guided by item intents, blind back translation, and a consensus meeting with the developer. The Dutch version of the HLQ was applied in a sample of non-hospitalized, chronically ill patients. Descriptive statistics were generated to describe mean, standard deviation and floor and ceiling effects for all items. A Confirmatory Factor Analysis (CFA) model was fitted to the data. Scores on the nine domains of the HLQ were compared across demographic and illness characteristics as a form of known-groups validity. Psychometric analyses included Cronbach's alpha, item-rest and item-remainder correlations. RESULTS: Using CFA, the Dutch HLQ psychometric structure was found to strongly align with the hypothesised (original) nine independent domains of the English version. The nine scales were found to be highly reliable (all scales had alpha between 0.83 and 0.94). Six of the nine HLQ-scales had items that show ceiling-effects. There were no ceiling effects present at the scale level. Scores on the scales of the HLQ differed according to demographic and illness characteristics: people who were older, lower educated and living alone and patients with multiple chronic diseases generally scored lower. CONCLUSIONS: The Dutch version of the HLQ is a robust and reliable instrument that measures nine different domains of health literacy. The questionnaire was tested in a sample of chronically ill patients, and should be further tested in the general population as well as in different disease groups. The HLQ is a major addition to currently available instruments in the Netherlands, since it measures health literacy from a multi-dimensional perspective and builds on patients' experiences and skills.

Self-care of patients with type 2 diabetes mellitus over the course of illness: implications for tailoring support.

PURPOSE: Type 2 diabetes requires patients to make lifestyle changes and perform daily self-care. To determine at what stages patients may need particular self-management support, we examined (1) whether patients' performance of self-care related to their diabetes duration, and (2) whether illness characteristics (treatment and complications) and diabetes-related distress influenced this relationship. METHODS: Cross-sectional data from 590 type 2 diabetes patients were analysed through linear and logistic regression analysis. Self-care behaviours were assessed by the revised Summary of Diabetes Self-Care Activities (SDSCA) measure. Diabetes duration (model 1), treatment and complications (model 2), and distress, as assessed by the Problem Areas In Diabetes (PAID) scale (model 3), were stepwise included. Sociodemographic characteristics were added to all models to account for confounding. RESULTS: Patients with a longer history of diabetes were less physically active, but monitored their blood glucose levels more frequently than more recently diagnosed patients. These relationships were mediated by the presence of complications and the use of insulin, with lower levels of physical activity being found among patients with macrovascular complications and higher frequencies of glucose monitoring among patients on insulin. All predictors together explained maximally 5% of the variance in self-care, except for glucose monitoring (37%) and smoking (11%). CONCLUSION: Type 2 diabetes patients' self-care activity changes over the course of illness. To provide tailored self-management support, diabetes care providers should take into account patients' phase of illness, including their treatment and complications, as well as their personal characteristics and distress level.

Identifying high-need patients with multimorbidity from their illness perceptions and personal resources to manage their health and care: a longitudinal study.

BACKGROUND: A proactive person-centred care process is advocated for people with multimorbidity. To that aim, general practitioners may benefit from support in the identification of high-need patients, i.e. patients who are high or suboptimal users of health services and/or have a poor quality of life. To develop such support, we examined whether knowledge about patients' illness perceptions and personal resources to manage their health and care is useful to identify high-need patients among multimorbid general practice populations. METHODS: Survey data, collected in 2016 and 2017, of 601 patients with two or more chronic diseases (e.g. COPD, diabetes, Parkinson's disease) registered with 40 general practices in the Netherlands were analysed by logistic regression analysis to predict frequent contact with the general practice, contact with general practice out-of-office services, unplanned hospitalisations and poor health related quality of life. Patients' illness perceptions and personal resources (education, health literacy, mastery, mental health status, financial resources, social support) were included as predictors. RESULTS: The four outcomes were only weakly associated among themselves (Phi .07-.19). Patients' illness perceptions and personal resources were of limited value to predict potentially suboptimal health service use, but they were important predictors of health related quality of life. Patients with a poor health related quality of life could be identified by their previously reported illness perceptions (attributing many symptoms to their chronic conditions (B = 1.479, P < .001), a high level of concern (B = 0.844, P = .002) and little perceived control over their illness (B = -0.728, P = .006)) combined with an experienced lack of social support (B = -0.527, P = .042) and a poor mental health status (B = -0.966, P = .001) (sensitivity 80.7%; specificity 68.1%). CONCLUSIONS: Multimorbid patients who frequently contact the general practice, use general practice out-of-office services, have unplanned hospitalisations or a poor health related quality of life are largely distinct high-need subgroups. Multimorbid patients at risk of developing a poor quality of life can be identified from specific illness beliefs, a poor mental health status and unmet social needs.

A Methodological Approach for Implementing an Integrated Multimorbidity Care Model: Results from the Pre-Implementation Stage of Joint Action CHRODIS-PLUS.

Patients with multimorbidity (defined as the co-occurrence of multiple chronic diseases) frequently experience fragmented care, which increases the risk of negative outcomes. A recently proposed Integrated Multimorbidity Care Model aims to overcome many issues related to fragmented care. In the context of Joint Action CHRODIS-PLUS, an implementation methodology was developed for the care model, which is being piloted in five sites. We aim to (1) explain the methodology used to implement the care model and (2) describe how the pilot sites have adapted and applied the proposed methodology. The model is being implemented in Spain (Andalusia and Aragon), Lithuania (Vilnius and Kaunas), and Italy (Rome). Local implementation working groups at each site adapted the model to local needs, goals, and resources using the same methodological steps: (1) Scope analysis; (2) situation analysis-"strengths, weaknesses, opportunities, threats" (SWOT) analysis; (3) development and improvement of implementation methodology; and (4) final development of an action plan. This common implementation strategy shows how care models can be adapted according to local and regional specificities. Analysis of the common key outcome indicators at the post-implementation phase will help to demonstrate the clinical effectiveness, as well as highlight any difficulties in adapting a common Integrated Multimorbidity Care Model in different countries and clinical settings.

Identifying subgroups of persons with multimorbidity based on their needs for care and support.

BACKGROUND: There is broad consensus that countries need to develop and implement person-centred integrated care to better meet the needs of their growing populations with multimorbidity. To develop appropriate care, it is essential to know the needs for care and support among these populations. For this purpose, we examined whether subgroups of people with multimorbidity could be distinguished based on their needs, and profiled these subgroups according to medical complexity and the availability of personal resources. METHODS: Persons diagnosed with two or more somatic chronic diseases (N = 613) were selected from 38 general practices throughout the Netherlands. We conducted a cluster analysis of their scores on the RAND-36 questionnaire of health-related quality of life (QoL), to gain insight in their needs for care and support. Differences in demographics, medical characteristics and personal resources between the identified clusters were tested using analysis of variance and chi-square tests. RESULTS: The cluster analysis revealed three subgroups: 1. a group with a relatively good QoL (48% of the sample), 2. a group with a poor physical QoL (28%), and 3. a group with a poor QoL in all domains assessed by the RAND-36 (24%). The group with a relatively good QoL had more favourable medical characteristics than the other groups, i.e., less chronic diseases, shorter illness duration, more stable course of illness, better controllable conditions, less polypharmacy. The group with a poor QoL in all domains could rely on less personal resources (education, income, social support, health literacy, self-management capabilities) than the other groups. CONCLUSIONS: Different subgroups of people with multimorbidity can be distinguished based on their needs for care and support. These needs are not only determined by demographic and medical characteristics, but also by the personal resources people have available to manage their health and care. Patient profiles combining medical complexity and personal resources could guide the development of integrated care for specific target groups of persons with multimorbidity.

People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy.

BACKGROUND: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation. METHODS: Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation. RESULTS: People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation. CONCLUSIONS: People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.

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.

From protocolized to person-centered chronic care in general practice: study protocol of an action-based research project (COPILOT).

AIM: To develop a proactive person-centered care approach for persons with (multiple) chronic diseases in general practice, and to explore the impact on 'Quadruple aims': experiences of patients and professionals, patient outcomes and costs of resources use. BACKGROUND: The management of people with multiple chronic diseases challenges health care systems designed around single disease. Patients with multimorbidity often receive highly fragmented care that may lead to inefficient, ineffective and potentially harmful treatments and neglect of essential health needs. A more comprehensive, person-centered approach is advocated for persons with multiple morbidities. However, examples on how to provide more person-centered care and evidence of its impact are scarce. A group of Dutch general practitioners (GPs) took the initiative to develop such a care approach. METHODS/DESIGN: Mixed methods with a development and pilot-testing phase. The proactive person-centered approach will be developed using an action-based research design consisting of multiple plan-act-observe-reflect-adjust cycles. In each cycle, experiences of patients and primary care professionals from 13 practices will be collected via interviews, observations and focus groups. Starting point for the first cycle is a 'person-centered consultation' of up to 1 h in which the GP discusses the health status and health care needs of the patient. Furthermore, shared decisions between GP and patient are made on treatment goals and follow-up. In the pilot-test phase, a nested case cohort study allows to explore the impact of the new approach on 'Quadruple aim' outcomes comparing persons with and without exposure to the new care approach. DISCUSSION: This study will provide a proactive person-centered approach for persons with multimorbidity in primary care and estimate its potential impact on quadruple outcomes.

Improving self-management of people with type 2 diabetes in the first years after diagnosis: Development and pilot of a theory-based interactive group intervention.

OBJECTIVES: To describe how principles of self-regulation and social support could be integrated in a group intervention to improve self-management of people with type 2 diabetes mellitus in the early phase of illness and to pilot its suitability in a primary care setting. METHODS: Principles of the Common-Sense Model of Self-Regulation, Social Cognitive Theory of Self-Regulation and social support theories were integrated in the intervention. Based on this, a three-session group course was developed to challenge illness perceptions of participants that discourage adequate self-management, to practice goal-setting and behavioural actions and to create a supportive environment. The intervention was piloted with persons with early-stage (1-3 years post diagnosis) type 2 diabetes mellitus selected in general practice in the Netherlands. Data about the suitability of the intervention were retrieved by means of observation and audio-recording of the sessions, an evaluation form filled in by the participants and an evaluation meeting with the group leaders. RESULTS: In total, 16 type 2 diabetes mellitus patients participated in the pilot, who were divided into a group of single participants (N = 8) and a group (N = 8) who participated with their partner. Discrepancies between perceptions of one's own condition and type 2 diabetes mellitus in general were observed. Goal-setting and developing action plans appeared to be difficult tasks for many participants, whereas others felt these exercises were not useful as they did not feel a need to make changes in living with diabetes. The group-based format was appreciated as was the participation of partners. CONCLUSION: Challenging the illness perceptions of persons with early-stage type 2 diabetes mellitus by a brief interactive group course is feasible and important, as many of these people tend to underestimate the seriousness of their diabetes. However, motivating persons with early-stage type 2 diabetes mellitus to participate in self-management interventions remains a challenge. Offering the intervention as an integral part of type 2 diabetes mellitus management in primary care is desirable.