Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data.

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.

What Facilitates or Hampers Living at Home With Advanced Dementia Until the End of Life? A Qualitative Study Using Retrospective Interviews Among Family Caregivers, General Practitioners, and Case Managers.

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.

Knowledge About Dementia Among Family Caregivers With a Turkish or Moroccan Immigrant Background: Development and Validation of a Dementia Knowledge Scale.

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.

Occurrence and Timing of Advance Care Planning in Persons With Dementia in General Practice: Analysis of Linked Electronic Health Records and Administrative Data.

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.

Prevalence of Health Problems and Health-Care Use in Partners of People with Dementia: Longitudinal Analysis with Routinely Recorded Health and Administrative Data.

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.

Factors Affecting Health Literacy as Related to Asthma and COPD Management: Learning from Patient and Health Care Professional Viewpoints.

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.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

Interventions for improving self-direction in people with dementia: a systematic review.

BACKGROUND: Dementia is a progressive disease that affects people's everyday functioning, including the ability to express values, needs and wishes, which can be considered key elements of self-direction. For the purpose of this review, self-direction refers to the organization and/or coordination of your own life, including professional and other care, with the objective of having what you perceive to be a good life. The aim of this systematic review was to assess and describe interventions that aim to improve self-direction of people with dementia. METHODS: A systematic search was conducted in PubMed, Embase, CINAHL, PsycInfo and the Cochrane Library. Empirical studies up to April 2020 were included that used qualitative and/or quantitative methods and reported on interventions for people with dementia aimed at improving self-direction. Stepwise study selection and the assessment of methodological quality were conducted independently by two authors. Data on study and intervention characteristics, outcomes related to self-direction and well-being of people with dementia and factors influencing the feasibility were extracted systematically and described narratively. RESULTS: Ten studies were identified describing a total of nine interventions. Interventions varied in terms of goals, content, target population and duration. Overall, interventions consisted of multiple components focusing on identifying "Who am I?" (beliefs, strengths, values, goals), identifying "What is important to me?" (meaningful activities and goal setting) and/or communicating about preferences with professionals and/or caregivers. The review provides indications that people with dementia may benefit from the interventions included. Overall, positive effects were found in studies on outcomes related to self-direction and wellbeing. However, outcomes measured using quantitative methods showed inconsistent effects between the studies. CONCLUSIONS: Although the methodological quality of all the studies included was 'good' or at least 'fair', the evidence base of interventions aiming to improve self-direction is still limited due to the low number of studies, the low number of participants and the frequent use of and their authors' own non-standardized measures. Nevertheless, the review points towards positive effects on self-direction and well-being. Identifying individual beliefs, strengths, values, goals and meaningful activities can be essential components of these interventions, as well as communication about the desired care and support.

Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial.

OBJECTIVE: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. METHODS: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. RESULTS: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. CONCLUSION: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. PRACTICE IMPLICATIONS: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care.

How Transitions in Dementia Care Trajectories Affect Health Problems in Partners: A Longitudinal Analysis With Linked Health and Administrative Data.

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.

Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial.

OBJECTIVE: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL. METHODS: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options. RESULTS: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05). CONCLUSION: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term. PRACTICE IMPLICATIONS: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds.

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.

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.

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.

Health literacy in chronic disease management: a matter of interaction.

Health literacy plays a crucial role in chronic disease management. To comprehensively manage chronic conditions on a daily basis, individuals must be able to assess, understand, evaluate, and use health information. Several key publications emphasize that health literacy is not merely a matter of individual skills but that it is highly dependent on the accessibility of health-care systems, the communication skills of health-care professionals, and the level of complexity of the health information. However, the literature indicates that health literacy is mainly framed and measured as an individual attribute in research. Focusing health literacy research solely on the individual, rather than also including the health-care context, limits our understanding of the type of actions that should be undertaken to facilitate a person's access to and understanding, evaluation and use of health information. This commentary highlights the importance of interpreting the concept of health literacy as a dynamic construct that emerges from the interaction between patients/citizens and health-care systems, organizations, and professionals. This approach has the potential to fill a gap in our understanding of the link between health literacy and chronic disease management. Such an understanding would facilitate the development of comprehensive health literacy measurement instruments and interventions to enhance health literacy.

Patient-centeredness of integrated care programs for people with multimorbidity. Results from the European ICARE4EU project.

INTRODUCTION: This paper aims to support the implementation of patient-centered care for people with multimorbidity in Europe, by providing insight into ways in which patient-centeredness is currently shaped in integrated care programs for people with multimorbidity in European countries. METHODS: In 2014, expert organizations in 31 European countries identified 200 integrated care practices ('programs') in 25 countries of which 123 were included in our study. Managers of 112 programs from 24 countries completed a questionnaire about characteristics and results of the program, including questions on elements of patient-centeredness. Eight programs that were considered especially innovative or promising were analyzed in depth. RESULTS: Programs used various methodologies to involve people with multimorbidity in decision-making, such as motivational interviewing and narrative counseling techniques. In 79 programs individual care plans were developed together with patients. Few programs had already been systematically evaluated, but in one program it was shown that working with individual care plans based on patients' goals and resources resulted in increased patient satisfaction with care. Various barriers to deliver patient-centered care were reported, including inadequate knowledge and skills of both patients and professionals. CONCLUSION: In many European countries innovative approaches are applied to increase patient-centeredness of care for people with multimorbidity. To assess their potential benefits and conditions for implementation, thorough process and outcome evaluations of programs are urgently needed.

Return to work of cancer patients after a multidisciplinary intervention including occupational counselling and physical exercise in cancer patients: a prospective study in the Netherlands.

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.

Health literacy and primary health care use of ethnic minorities in the Netherlands.

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.

Health-Related Factors Associated with Discrepancies between Children's Potential and Attained Secondary School Level: A Longitudinal Study.

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.

Health literacy in Europe: the development and validation of health literacy prediction models.

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.

The impact of comorbid chronic conditions on quality of life in type 2 diabetes patients.

OBJECTIVE: To study the prevalence, impact and dose-response relationship of comorbid chronic conditions on quality of life of type 2 diabetes patients. RESEARCH DESIGN AND METHODS: Cross-sectional data of 1676 type 2 diabetes patients, aged 31-96 years, and treated in primary care, were analyzed. Quality of life (QoL) was measured using the mental component summary (MCS) and the physical component summary (PCS) scores of the Short Form-12. Diagnosis of type 2 diabetes was obtained from medical records and comorbidities from self-reports. RESULTS: Only 361 (21.5%) of the patients reported no comorbidities. Diabetes patients with comorbidities showed significantly lower mean difference in PCS [-8.5; 95% confidence interval (CI) -9.8 to -7.3] and MCS scores (-1.9; 95% CI -3.0 to -0.9), compared to diabetes patients without. Additional adjustments did not substantially change these associations. Both MCS and PCS scores decrease significantly with the number of comorbid conditions, yet most pronounced regarding physical QoL. Comorbidities that reduced physical QoL most significantly were retinopathy, heart diseases, atherosclerosis in abdomen or legs, lung diseases, incontinence, back, neck and shoulder disorder, osteoarthritis and chronic rheumatoid arthritis, using the backwards stepwise regression procedure. CONCLUSION: Comorbidities are highly prevalent among type 2 diabetes patients and have a negative impact on the patient's QoL. A strong dose-response relationship between comorbidities and physical QoL was found. Reduced physical QoL is mainly determined by musculoskeletal and cardiovascular disorders.