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Background: Unplanned admissions to hospital represent a hazardous event for older people. Timely identification of high-risk individuals using a prediction tool may facilitate preventive interventions. Aim: To develop and validate an easy-to-use prediction model for unplanned admissions to hospital in community-dwelling older adults using readily available data to allow rapid bedside assessment by GPs. Design and setting: This was a retrospective study using the general practice electronic health records of 243 324 community-dwelling adults aged ≥65 years linked with national administrative data to predict unplanned admissions to hospital within 6 months. Method: The dataset was geographically split into a development (n = 142 791/243 324, 58.7%) and validation (n = 100 533/243 324, 41.3%) sample to predict unplanned admissions to hospital within 6 months. The performance of three different models was evaluated with increasingly smaller selections of candidate predictors (optimal, readily available, and easy-to-use models). Logistic regression was used with backward selection for model development. The models were validated internally and externally. Predictive performance was assessed by area under the curve (AUC) and calibration plots. Results: In both samples, 7.6% (development cohort: n = 10 839/142 791, validation cohort: n = 7675/100 533) had ≥1 unplanned hospital admission within 6 months. The discriminative ability of the three models was comparable and remained stable after geographic validation. The easy-to-use model included age, sex, prior admissions to hospital, pulmonary emphysema, heart failure, and polypharmacy. Its discriminative ability after validation was AUC 0.72 (95% confidence interval = 0.71 to 0.72). Calibration plots showed good calibration. Conclusion: The models showed satisfactory predictive ability. Reducing the number of predictors and geographic validation did not have an impact on predictive performance, demonstrating the robustness of the model. An easy-to-use tool has been developed in this study that may assist GPs in decision making and with targeted preventive interventions. [ABSTRACT FROM AUTHOR]

Objectives: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. Methods: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. Results: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long‐term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. Conclusions: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs. Key points: Health and social care costs among persons with dementia increase substantially during the disease trajectory.This steep rise in costs during the disease trajectory is mainly due to institutional care costs.For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia.For people who are admitted to a long‐term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. [ABSTRACT FROM AUTHOR]

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data. [ABSTRACT FROM AUTHOR]

One of the barriers regarding evidence-informed decision making is the gap between the needs of policy makers and the ways researchers present evidence. This pilot study evaluates the barriers and facilitators to the implementation of a tool to enhance transparent and unambiguous communication on scientific evidence by knowledge workers. Therefore, mixed methods (qualitative and quantitative) were applied. The results indicate that to promote successful implementation of such a tool, efforts should be undertaken to provide time and guidance on how to adapt routines and on how to apply the tool to various products.

This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers. [ABSTRACT FROM AUTHOR]

Introduction: This study aims to provide insight into the prevalence of health problems and the frequency of general practitioner (GP) contacts in cohabiting partners of persons with dementia, during the year prior to the dementia diagnosis and up to 3 years after the diagnosis. Methods: Partners of persons with dementia and a matched control group of partners of persons without dementia were identified in the routinely recorded electronic health records of 451 Dutch general practices in 2008–2015. These data were used to examine the prevalence of the partners' health problems. Differences between these partners and comparison partners in the prevalence of 16 groups of health problems (diagnostic chapters) and in the frequency of GP contacts were examined using generalized estimating equation models. Results: 1,711 partners of persons with dementia and 6,201 comparison partners were included in the analyses. Social problems, more specifically problems related to the illness and/or the loss of the partner, were significantly more prevalent in partners than in comparison partners across the years (p < 0.01), as were musculoskeletal problems (p < 0.01). Respiratory and psychological problems increased over time in partners and remained stable in comparison partners. Across the years, partners contacted their GP more often than comparison partners (p < 0.01). Discussion/Conclusion: Having a cohabiting partner with dementia has consequences for caregiver's physical and psychosocial health. The specific health problems found in this study and the increase in GP contacts might be relevant indicators of overburdening in partners of persons with dementia. [ABSTRACT FROM AUTHOR]

Objective: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. Methods: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach's α. The known group validity was determined by comparing mean scores between subgroups. Results: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. Conclusions: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. Practice Implications: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups. [ABSTRACT FROM AUTHOR]

Objective: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. Methods: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach's a. The known group validity was determined by comparing mean scores between subgroups. Results: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. Conclusions: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. Practice Implications: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups. [ABSTRACT FROM AUTHOR]

Objectives To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Discussion Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health. [ABSTRACT FROM AUTHOR]

Objectives To support return to work (RTW) among cancer patients, a multidisciplinary rehabilitation programme was developed which combined occupational counselling with a supervised physical exercise programme during chemotherapy. The aim was to investigate RTW rates of cancer patients and to evaluate changes in work-related quality of life and physical outcomes. Design Longitudinal prospective intervention study using a one-group design. Setting Two hospitals in the Netherlands. Participants Of the eligible patients, 56% participated; 93 patients with a primary diagnosis of cancer receiving chemotherapy and on sick leave were included. Patients completed questionnaires on RTW, the importance of work, work ability (WAI), RTW self-efficacy, fatigue (MFI), and quality of life (EORTC QLQ C-30) at baseline and 6, 12 and 18 months follow-up. Before and after the exercise programme 1-repetition maximum (1RM) muscle strength and cardiorespiratory fitness (VO2 peak) were assessed. Results Six months after the start of a multidisciplinary rehabilitation programme that combined occupational counselling with a supervised physical exercise programme, 59% of the cancer patients returned to work, 86% at 12 months and 83% at 18 months. In addition, significant improvements (p<0.05) in the importance of work, work ability, RTW self-efficacy, and quality of life were observed, whereas fatigue levels were significantly reduced. After completing the exercise programme, 1RM muscle strength was significantly increased but there was no improvement in VO2 peak level. Conclusions RTW rates of cancer patients were high after completion of the multidisciplinary rehabilitation programme. A multidisciplinary rehabilitation programme which combines occupational counselling with a supervised physical exercise programme is likely to result in RTW, reduced fatigue and increased importance of work, work ability, and quality of life. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, ethnic minority populations visit their general practitioner (GP) more often than the indigenous population. An explanation for this association is lacking. Recently, health literacy is suggested as a possible explaining mechanism. Internationally, associations between health literacy and health care use, and between ethnicity and health literacy have been studied separately, but, so far, have not been linked to each other. In the Netherlands, some expectations have been expressed with regard to supposed low health literacy of ethnic minority groups, however, no empirical study has been done so far. The objectives of this study are therefore to acquire insight into the level of health literacy of ethnic minorities in the Netherlands and to examine whether the relationship between ethnicity and health care use can be (partly) explained by health literacy.Methods: A questionnaire was sent to a sample of 2.116 members of the Dutch Health Care Consumer Panel (response rate 46%, 89 respondents of non-western origin). Health literacy was measured with the Health Literacy Questionnaire (HLQ) which covers nine different domains. The health literacy levels of ethnic minority groups were compared to the indigenous population. A negative binomial regression model was used to estimate the association between ethnicity and GP visits. To examine whether health literacy is an explaining factor in this association, health literacy and interaction terms of health literacy and ethnicity were added into the model.Results: Differences in levels of health literacy were only found between the Turkish population and the indigenous Dutch population. This study also found an association between ethnicity and GP visits. Ethnic minorities visit their GP 33% more often than the indigenous population. Three domains of the HLQ (the ability to navigate the health care system, the ability to find information and to read and understand health information) partly explained the association between ethnicity and GP visits.Conclusions: In general, there are no differences in health literacy between most of the ethnic minority groups in the Netherlands and the indigenous Dutch population. Only the Turkish population scored significantly lower on several health literacy domains. Some domains of health literacy do explain the association between ethnicity and higher frequency of GP visits. Further research is recommended to understand the pathways through which health literacy impacts health care use. [ABSTRACT FROM AUTHOR]

Objectives: This longitudinal study examines children’s health-related characteristics in relation to discrepancies between their educational potential assessed by a cognitive test in primary school at age 11 and their attained secondary school level at age 14. Methods: Data were used from 1510 participants of the Dutch PIAMA (Prevention and Incidence of Asthma and Mite Allergy) birth cohort. Multiple multinomial logistic regression analyses were used to estimate the associations between indicators of physical health, psychosocial health, lifestyle, sleeping patterns and stressful life events and attending a higher or lower level of secondary education than indicated by the cognitive test. Results: We found no evidence that physical health contributes to discrepancies between the potential and attained level of secondary education, but attention disorders and stressful life events (nasty experiences and parents’ divorce) were associated with educational attainment below children’s potential level. Furthermore, substance use (alcohol, drugs and smoking) were strongly associated with attending a lower level of secondary education than expected (odds ratios from 2.2 (CI: 1.5–3.3) to 5.0 (CI: 2.8–8.7)). Conclusion: In this general population study, attention disorders, stressful life events and especially substance use seemed to be more important than physical health for the discrepancy between expected and attained level of secondary education. The longitudinal design of the present study and the broad range of health-related factors that were studied, adds insights to the process of health-selection. [ABSTRACT FROM AUTHOR]

Background: Health literacy is an important determinant of health, but national health literacy levels are known for only some European countries. This study aims to examine to what extent national health literacy levels can be estimated based on publicly available census data. Method: Multivariate models were used to predict two types of health literacy on population level. Predictors were selected based on literature, the European Health Literacy Survey (HLS-EU) and the Adult Literacy and Life Skills Survey (ALL). The HLS-EU provides insight into self-assessed health literacy and the ALL into the performance of individuals on health literacy tasks (performance-based health literacy). Dutch HLS-EU and ALL data were used to construct prediction models based on 2/3 of this data, which were validated in the remaining 1/3 of the data and (in case of self-assessed health literacy) in data from seven other European countries. Results: Education is a significant predictor of perceived and performance-based health literacy. Age and working status are significant predictors of performance-based health literacy, whereas gender and income are significant predictors of self-assessed health literacy. Both typologies of health literacy can satisfactorily be predicted within samples of the Dutch population. The accuracy of estimated self-assessed health literacy varied between the seven other European countries. Conclusion: Prediction models based on publicly available census data can be used for estimating self-assessed and performance-based health literacy on population level. Observed health literacy levels or better prediction models are required when one is interested in ranking European countries. [ABSTRACT FROM AUTHOR]

Purpose. The purpose of this study is to examine to what extent health literacy is associated with parental preferences concerning childhood vaccination. Methods. A cross-sectional study was conducted among 467 Dutch parents of newborns aged 6 weeks (response rate of 37%). A self-reported questionnaire was used to measure health literacy by means of Chew’s Set of Brief Screening Questions, as well as parental preferences for rotavirus vaccination by means of a discrete choice experiment. Five rotavirus-related characteristics were included (i.e., vaccine effectiveness, frequency of severe side effects, location of vaccination, protection duration, and out-of-pocket costs). Panel latent class models were conducted, and health literacy and educational level were added to the class probability model to determine the association between health literacy and study outcomes. Results. Lower educated and lower health literate respondents considered protection duration to be more important and vaccine effectiveness and frequency of severe side effects to be less important compared with higher educated and higher health literate respondents. While all respondents were willing to vaccinate against rotavirus when the vaccine was offered as part of the National Immunization Program, only lower educated and lower health literate parents were willing to vaccinate when the vaccine was offered on the free market. Conclusion: Health literacy is associated with parents’ preferences for rotavirus vaccination. Whether differences in vaccination decisions are actually due to varying preferences or might be better explained by varying levels of understanding should be further investigated. To contribute to more accurate interpretation of study results, it may be advisable that researchers measure and report health literacy when they study vaccination decision behavior. [ABSTRACT FROM AUTHOR]

Various studies have examined the association between health literacy and self-management behavior, but few have explored ways through which this occurs. The present study examines to what extent health literacy is associated with diabetes self-management behavior and to what extent diabetes knowledge is a mechanism in this association. The study was based on cross-sectional data retrieved from patient registrations and questionnaires completed in 2010. The sample included 1,714 predominantly type 2 diabetes patients, with a mean age of 67 years. Diabetes self-management was indicated by HbA1c level, glucose self-control and self-reported monitoring of glucose levels, physical activity, and smoking. Multilevel analyses were applied based on multiple imputed data. Lower health literacy was significantly associated with less diabetes knowledge, higher HbA1c level, less self-control of glucose level, and less physical activity. Participants with more diabetes knowledge were less likely to smoke and more likely to control glucose levels. Diabetes knowledge was a mediator in the association between health literacy and glucose self-control and between health literacy and smoking. This study indicates that higher health literacy may contribute to participation in certain self-management activities, in some cases through diabetes knowledge. Diabetes knowledge and health literacy skills may be important targets for interventions promoting diabetes self-management. [ABSTRACT FROM PUBLISHER]

Health literacy has been put forward as a potential mechanism explaining the well-documented relationship between education and health. However, little empirical research has been undertaken to explore this hypothesis. The present study aims to study whether health literacy could be a pathway by which level of education affects health status. Health literacy was measured by the Health Activities and Literacy Scale, using data from a subsample of 5,136 adults between the ages of 25 and 65 years, gathered within the context of the 2007 Dutch Adult Literacy and Life Skills Survey. Linear regression analyses were used in separate models to estimate the extent to which health literacy mediates educational disparities in self-reported general health, physical health status, and mental health status as measured by the Short Form-12. Health literacy was found to partially mediate the association between low education and low self-reported health status. As such, improving health literacy may be a useful strategy for reducing disparities in health related to education, as health literacy appears to play a role in explaining the underlying mechanism driving the relationship between low level of education and poor health. [ABSTRACT FROM PUBLISHER]

Background: Relatively little knowledge is available to date about health literacy among the general population in Europe. It is important to gain insights into health literacy competences among the general population, as this might contribute to more effective health promotion and help clarify socio-economic disparities in health. This paper is part of the European Health Literacy Survey (HLS-EU). It aims to add to the body of theoretical knowledge about health literacy by measuring perceived difficulties with health information in various domains of health, looking at a number of competences. The definition and measure of health literacy is still topic of debate and hardly any instruments are available that are applicable for the general population. The objectives were to obtain an initial measure of health literacy in a sample of the general population in the Netherlands and to relate this measure to education, income, perceived social status, age, and sex. Methods: The HLS-EU questionnaire was administered face-to-face in a sample of 925 Dutch adults, during July 2011. Perceived difficulties with the health literacy competences for accessing, understanding, appraising and applying information were measured within the domains of healthcare, disease prevention and health promotion. Multiple linear regression analyses were applied to explore the associations between health literacy competences and education, income, perceived social status, age, and sex. Results: Perceived difficulties with health information and their association with demographic and socio-economic variables vary according to the competence and health domain addressed. Having a low level of education or a low perceived social status or being male were consistently found to be significantly related to relatively low health literacy scores, mainly for accessing and understanding health information. Conclusions: Perceived difficulties with health information vary between competences and domains of health. Health literacy competences are associated with indicators of socio-economic position and with the domain in which health information is provided. [ABSTRACT FROM AUTHOR]

Background Several studies regarding the effect of retirement on physical as well as mental health have been performed, but the results thereof remain inconclusive. The aim of this review is to systematically summarise the literature on the health effects of retirement, describing differences in terms of voluntary, involuntary and regulatory retirement and between blue-collar and white-collar workers. Methods A search for longitudinal studies using keywords that referred to the exposure (retirement), outcome (health-related) and study design (longitudinal) was performed using several electronic databases. Articles were then selected for full text analysis and the reference lists of the selected studies were checked for relevant studies. The quality of the studies was rated based on predefined criteria. Data was analysed qualitatively by using a best evidence synthesis. When possible, pooled mean differences and effect sizes were calculated to estimate the effect of retirement on health. Results Twenty-two longitudinal studies were included, of which eleven were deemed to be of high quality. Strong evidence was found for retirement having a beneficial effect on mental health, and contradictory evidence was found for retirement having an effect on perceived general health and physical health. Few studies examined the differences between blue- and white-collar workers and between voluntary, involuntary and regulatory retirement with regards to the effect of retirement on health outcomes. Conclusions More longitudinal research on the health effects of retirement is needed, including research into potentially influencing factors such as work characteristics and the characteristics of retirement. [ABSTRACT FROM AUTHOR]

Introduction: Many countries face a rapid increase in the number of inhabitants living with multiple chronic conditions. At the same time, models of care that have been implemented in western countries seem to under-perform in terms of quality and outcomes, when it comes to multimorbidity management. People with multimorbidity often receive fragmented care, because of the disease-specific organisation of many health services. In addition, the segregation of health and social care in many countries obstruct the delivery of integrated care. Moreover, multimorbidity is accountable for high costs, which could be attributed to the high needs of multimorbid patients, but also to inefficiency in care delivery. To develop effective and sustainable care that meet the needs of people with multimorbidity, it is essential to get a better understanding of what care is needed by whom. This would allow the development of care models and the allocation of resources to better fit the needs of various subpopulations of people with multimorbidity. For instance, some people may be best served by primary care, whereas others may (also) need specialist care, home care or social care. For this purpose, we aimed to gain insight in patient characteristics that determine multimorbid patients' needs for care. Methods: We analyzed data of 542 people with multimorbidity participating in a nationwide panel study in the Netherlands. All participants had been diagnosed with two or more chronic diseases, as registered by their general practitioners. To identify subgroups with different health-related needs, we conducted cluster analysis based on participants' scores on the RAND-36. Subsequently, bivariate analyses (ANOVAs, Chisquare tests) were conducted to describe the subgroups and to test for between-group differences. Results: Three subgroups of multimorbid patients could be distinguished: a subgroup of almost half of the participants, who had high scores on all eight RAND-36 scales; a second group (27%) with somewhat lower scores on most scales but experiencing in particular more problems with physical functioning than the first group; and a third group (24%) with low scores on all scales but experiencing in particular huge limitations in role functioning due to both physical and emotional problems. In the last two groups significantly more people had been diagnosed with musculoskeletal diseases (P <05). The three groups also differed with regard to illness duration (P <.001) and the number of chronic diseases they had been diagnosed with (P <.05). Remarkably, the three groups did not differ in age, but they differed in many other aspects, such as in education level and social deprivation. For instance, half of the people in the third group had a low education level, whereas the proportions low educated people in the other two groups were much lower (P <.001). Discussion: Our results show that not all people with multimorbidity are 'high-need patients', but substantial subgroups with high or specific health-related needs exist. These people may be most in need for person-centered, integrated care, including social care and community services. Koivuniemi and Simonen (2011) developed a 'clientship' model, based on combining the medical complexity of patients' condition and the resources they have at their disposal to cope with their condition, resulting in four clientship profiles: 1. self-management clientship (medical problem not complex, good resources); 2. co-operation clientship (medical problem complex, good resources); 3. community clientship (medical problem not complex, poor resources); 4. network clientship (medical problem complex, poor resources). This typology could guide the development of care models at a local or regional level, which could be used as a basis for multimorbid patients' individualised care plans. The results of our study show which characteristics and resources of patients should be taken into account, when developing profiles of multimorbid patients with specific needs for integrated care. Conclusion: People with multimorbidity are not all high-need patients, but a substantial proportion have needs that ask for more comprehensive, person-centred models of care. These people cannot be identified by the complexity of their medical condition alone; sociodemographic characteristics as well as patients' personal resources should also be taken into account. [ABSTRACT FROM AUTHOR]

Introduction: Integrated and patient-centered care is considered an effective response to the needs of people who suffer from multiple chronic conditions. People with multimorbidity often need care from multiple healthcare providers and various disciplines. A better coordination and integration of this care would improve its quality. Additionally, a patient-centered care approach would improve the quality of care for people with multimoribidty. Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. In practice this means that the patients' personal health goals should be the starting point when deciding on care and treatment options. This is especially important for people who suffer from multiple chronic conditions, because outcomes of disease specific treatments might not always be feasible due to the many health problems. Besides patients' personal health goals, their preferences for treatment options and their resources should be taken into account when deciding on the type(s) of treatment or care. However, providing patient-centered care may not be easily realized in daily practice, as it requires specific skills of healthcare providers, and characteristics of the delivery system may be hindering. In the project Innovating care for people with multiple chronic conditions in Europe (ICARE4EU), we explored how patientcenteredness is currently given shape in innovative European integrated care initiatives for people with multimorbidity. Methods: In 2014, the ICARE4EU project selected 101 innovative integrated care practices (referred to as programmes) in 31 European countries. These programmes were collected via country experts and the selection of programmes was based on pre-defined criteria. Via questionnaires, the programme managers provided details about the characteristics of the selected programmes, including characteristics related to patient-centeredness. Eight of the programmes were considered very innovative based on the questionnaire and were therefore visited by two ICARE4EU project partners. Results: Almost all managers of the 101 integrated care programmes reported that the programme improved patient-centeredness (92%), but there was a wide variety in the tools that were used for this purpose. For instance, motivational interviewing by care providers was applied in 52 practices. Furthermore, case managers were appointed in 41 practices. In 70 practices individual care plans were introduced, but implementation of such plans was often lower than intended. In almost half of the selected innovative care programmes, the involvement of informal carers was described as an objective. Informal carers are addressed by as co-client in 17 programmes and as co-care provider in 27 programmes. Reported barriers to provide more patient-centered care were e.g. inadequate knowledge of patients (61%), lack of time (56%), inadequate knowledge or skills of care providers (45%) and lack of a clear vision of managers (40%). To illustrate successful approaches as well as their barriers, specific programmes will be discussed in more detail, including the Finnish POTKU project. Discussion: A positive attitude of healthcare providers is key, but not sufficient to provide care that is really patient-centered. Structural changes are needed in all domains, e.g. training, care delivery, information systems and financing. The involvement of informal carers as coclient and co-carer seems not generally applied yet in current European integrated care programmes. A limitation of our study is that not all of the selected integrated care programmes were visited. Therefore, practices could deviate from what was described in the questionnaire. Furthermore, we found that the effects of the selected innovative programmes were often not evaluated. A suggestion for future research is therefore to evaluate the effects of current innovative practices on for instance quality and efficiency of care. Conclusion: Based on observations from the ICARE4EU project, it can be concluded that efforts are being undertaken in many European countries, directed at improving the quality of care for people with multimorbidity by incorporating elements of patient-centeredness. Certain elements of patient-centered care, such as the involvement of patients in shared-goal setting, the involvement of informal carers and the use of care plans are not generally applied yet. [ABSTRACT FROM AUTHOR]

Introduction: During the last decade, individual care plans (ICPs) have been introduced in healthcare in many countries. ICPs are used in different settings and for different purposes. In chronic illness care, ICPs are implemented to improve patient-centeredness, i.e. to ensure that decision-making about treatment and care and the actual delivery of care is based on patients' self-assessed needs and personal goals, and is tailored to their preferences and competencies. In addition, ICPs are implemented to support patients' self-management. In terms of the Chronic Care Model (Wagner et al., 1998), these two purposes refer to interventions in different components: delivery system design and self-management support. With this paper we aim to provide more insight in the use of ICPs in chronic illness (primary) care in the Netherlands and in other European countries: to what extent and for which purpose have they been implemented, for which target populations and which outcomes have been achieved?. Methods: Data were collected in three ways: 1. by a patient survey among a nationwide sample of 1602 patients with a (medically diagnosed) chronic disease registered in 82 general practices in the Netherlands, 2. by surveys among patients with COPD, diabetes type 2 or cardiovascular disease/high risk and their primary care providers participating in pretestposttest evaluation studies of several ICP-related interventions in the Netherlands, and 3. by a survey among country experts of 31 European countries and subsequent site visits to regional integrated care programs or practices targeting patients with multi-morbidity in several European countries as part of the ICARE4EU-project (www.icare4eu.org). Results: Overall, the use of ICPs in Dutch chronic illness primary care in 2011 was low (9%), with slightly higher percentages of ICP-use found among patients with diabetes or COPD (13%), both diseases for which disease management programs have been implemented in the Netherlands. A low implementation level was also reported in studies from Norway and the UK. More recently, Dutch care groups who facilitated training and support for primary care providers to start working with ICPs succeeded in increasing the use of ICPs in their disease management programs for COPD, diabetes and cardiovascular disease/high risk (up to 36% of the participating patients). Primary care physicians and nurses reported various reasons to decide whether or not to develop an ICP with a specific patient. Some reported to use an ICP with patients with very complex health conditions, whereas others used ICPs with patients whom they perceived to be better prepared for self-management. These different reasons suggest that primary care providers use ICPs for different purposes. Several evaluation studies show that patients with whom an ICP had been developed experienced better chronic illness care (as assessed by the PACIC-questionnaire) than patients without an ICP. However, improvements in self-management were usually not found. One study showed no difference in outcomes between diabetes patients with a low or high (pretest) activation level (PAM). In 24 of the 31 countries included in the ICARE4EU-survey, integrated care programs were found in which the use of ICPs was reported. In the POTKU-project, which aimed to improve patient-centeredness of chronic illness primary care in Middle Finland, patients with an ICP reported to receive better chronic illness care (PACIC-scores) than patients without an ICP. But also in this project the implementation of ICPs lagged behind expectations, which -like in the Dutch evaluation studies- was attributed to poor integration of the ICP with the health information system, lack of time and patient characteristics. Highlights: - The implementation of ICPs in chronic illness care in European countries is still low, which seems partly due to impeding factors in the organization of the care (e.g. health information systems, allocation of staff time). - Healthcare providers seem to use ICPs for different purposes, which is reflected in their selection of patients with whom they develop an ICP. - ICPs have the potential to improve patient-centeredness: patients with an ICP report to receive care that is more guided by their personal goals and preferences than patients without an ICP. - There is currently insufficient evidence that ICPs also improve chronically ill patients' selfmanagement. Conclusion: There is a gap between policy aspirations and clinical practice of the use of ICPs in chronic illness care in the Netherlands and in other European countries. Factors in the organization of primary care (e.g. time investment, supportive environments) need to be addressed to improve implementation. ICPs may improve patient-centeredness rather than patients' self-management in chronic illness care. [ABSTRACT FROM AUTHOR]

Background: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018.Methods: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German.Results: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured.Conclusions: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs. [ABSTRACT FROM AUTHOR]

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support., Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability)., Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources., Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data., Competing Interests: The authors declare that they have no conflicts of interest pertaining to the research presented in this paper., (© 2023 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)

Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP., Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018)., Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation., Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer FP is currently organizing a Research Topic with one author HH., (Copyright © 2022 Azizi, Tilburgs, van Hout, van der Heide, Verheij, Achterberg, van der Steen and Joling.)

Background: Studies have identified health literacy (HL) as an important determinant of asthma and chronic obstructive pulmonary disease (COPD) management. There are, however, limited data on patients' and health care professionals (HCPs') insights about the link between HL and management of asthma and COPD., Objective: The aim of this study was to elicit patients' and HCPs' perspectives with respect to factors affecting HL in the context of asthma and COPD management., Methods: A total of 16 semi-structured focus groups (10 in English and 6 in French) with patients with asthma or COPD (n = 93) and 45 interviews with HCPs, researchers, and policymakers were conducted between June 2015 and April 2017. Participants were asked to share their perspectives with respect to five predefined HL domains-accessing, understanding, evaluating, communicating, and using health-related information-in relation to disease self-management practices. Data were analyzed qualitatively, using a content analysis approach., Key Results: Most patients and HCPs reflected on factors hampering HL in relation to asthma and COPD management. Thoughts such as "not having enough time during medical consultations," "not receiving consistent messages from different health care professionals," and "language or cultural differences" were frequently mentioned by both patients and HCPs., Conclusions: We identified multiple factors affecting communication between patients and HCPs as it relates to the self-management of their disease. These included inconsistent messages from different providers, limited consultation time, use of technical language, failure to account for cultural differences, and reduced health literacy, especially as it related to written communication. Future interventions that aim to enhance HL skills in the context of asthma and COPD self-management should consider these issues. [ HLRP: Health Literacy Research and Practice . 2021;5(3):e179-e193.] Plain Language Summary: The current study advances the health literacy (HL) knowledge base by adding patients' and health care professionals' valuable insights on factors that hamper or facilitate HL in relation to asthma and chronic obstructive pulmonary disease (COPD) management. An important insight from this study is that receiving conflicting information from different health care professional's hampers HL in patients with asthma and/or COPD.

Purpose: The purpose of this study is to examine to what extent health literacy is associated with parental preferences concerning childhood vaccination., Methods: A cross-sectional study was conducted among 467 Dutch parents of newborns aged 6 weeks (response rate of 37%). A self-reported questionnaire was used to measure health literacy by means of Chew's Set of Brief Screening Questions, as well as parental preferences for rotavirus vaccination by means of a discrete choice experiment. Five rotavirus-related characteristics were included (i.e., vaccine effectiveness, frequency of severe side effects, location of vaccination, protection duration, and out-of-pocket costs). Panel latent class models were conducted, and health literacy and educational level were added to the class probability model to determine the association between health literacy and study outcomes., Results: Lower educated and lower health literate respondents considered protection duration to be more important and vaccine effectiveness and frequency of severe side effects to be less important compared with higher educated and higher health literate respondents. While all respondents were willing to vaccinate against rotavirus when the vaccine was offered as part of the National Immunization Program, only lower educated and lower health literate parents were willing to vaccinate when the vaccine was offered on the free market., Conclusion: Health literacy is associated with parents' preferences for rotavirus vaccination. Whether differences in vaccination decisions are actually due to varying preferences or might be better explained by varying levels of understanding should be further investigated. To contribute to more accurate interpretation of study results, it may be advisable that researchers measure and report health literacy when they study vaccination decision behavior., (© The Author(s) 2015.)