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OBJECTIVE To study the overall effect of the Active Prevention in High-Risk Individuals of Diabetes Type 2 in and Around Eindhoven (APHRODITE) lifestyle intervention on type 2 diabetes risk reduction in Dutch primary care after 0.5 and 1.5 years and to evaluate the variability between general practices. RESEARCH DESIGN AND METHODS Individuals at high risk for type 2 diabetes (Finnish Diabetes Risk Score ≥13) were randomly assigned into an intervention group (n = 479) or a usual-care group (n = 446). Comparisons were made between study groups and between general practices regarding changes in clinical and lifestyle measures over 1.5 years. Participant, general practitioner, and nurse practitioner characteristics were compared between individuals who lost weight or maintained a stable weight and individuals who gained weight. RESULTS Both groups showed modest changes in glucose values, weight measures, physical activity, energy intake, and fiber intake. Differences between groups were significant only for total physical activity, saturated fat intake, and fiber intake. Differences between general practices were significant for BMI and 2-h glucose but not for energy intake and physical activity. In the intervention group, the nurse practitioners' mean years of work experience was significantly longer in individuals who were successful at losing weight or maintaining a stable weight compared with unsuccessful individuals. Furthermore, successful individuals more often had a partner. CONCLUSIONS Risk factors for type 2 diabetes could be significantly reduced by lifestyle counseling in Dutch primary care. The small differences in changes over time between the two study groups suggest that additional intervention effects are modest. In particular, the level of experience of the nurse practitioner and the availability of partner support seem to facilitate intervention success. [ABSTRACT FROM AUTHOR]

Abstract Background In 2006, the Dutch government initiated Hello World, an email-based program promoting healthy lifestyles among pregnant women through quizzes with pregnancy-related questions. In 2008, an updated version was released. The present study aimed to (1) examine the reach of Hello World and the representativeness of its users for all pregnant women in the Netherlands, (2) explore the relationship between program engagement and lifestyle characteristics, and (3) explore the relationship between the program content participants accessed (content on smoking, physical activity, and nutrition) and their lifestyle characteristics. Methods Data from 4,363 pregnant women were included. After registration, women received an online questionnaire with demographic and lifestyle questions. To evaluate their representativeness, their demographic characteristics were compared with existing data for Dutch (pregnant) women. Women were classified on the following lifestyle characteristics: smoking, nutrition, physical activity, and pre-pregnancy weight status. Program use was tracked and the relationships between lifestyle characteristics, program engagement, and the percentage of smoking, physical activity, and nutrition questions accessed after opening a quiz were explored using Mann–Whitney U tests and Kruskal-Wallis tests. Results Hello World reached ±4% of its target population. Ten percent of participants were low educated and 22% immigrants. On average, women received 6.1 (SD:2.8) quiz emails and opened 32% of the associated quizzes (2.0, SD:2.1). A significant positive association was found between the number of quizzes opened and the number of healthy lifestyle characteristics. After opening a quiz, women accessed most smoking, nutrition, and physical activity questions. Significant relationships were found between several lifestyle characteristics and the percentage of smoking, physical activity, and nutrition questions accessed. However, between-group differences were small, quiz topics were largely unrelated to their lifestyle characteristics, and inconsistencies were found regarding the directions of these associations. Conclusions Hello World reached ±4% of its target population, which is lower than the reach of its previous version (±8%). Relatively few low educated and immigrant women registered for the program. Active participation in the program was positively associated with the number of healthy behaviours participants engaged in. The program content participants chose to access was largely unrelated to their lifestyle characteristics.

Abstract Background Although environmental characteristics as perceived by parents are known to be related to children’s outdoor play behavior, less is known about the relation between independently measured neighborhood characteristics and outdoor play among children. The purpose of this study was to identify quantitative as well as qualitative neighborhood characteristics related to outdoor play by means of neighborhood observations. Methods Questionnaires including questions on outdoor play behavior of the child were distributed among 3,651 parents of primary school children (aged 4–12 years). Furthermore, neighborhood observations were conducted in 33 Dutch neighborhoods to map neighborhood characteristics such as buildings, formal outdoor play facilities, public space, street pattern, traffic safety, social neighborhood characteristics, and general impression. Data of the questionnaires and the neighborhood observations were coupled via postal code of the respondents. Multilevel GEE analyses were performed to quantify the correlation between outdoor play and independently measured neighborhood characteristics. Results Parental education was negatively associated with outdoor play among children. Neither the presence nor the overall quality of formal outdoor play facilities were (positively) related to outdoor play among children in this study. Rather, informal play areas such as the presence of sidewalks were related to children’s outdoor play. Also, traffic safety was an important characteristic associated with outdoor play. Conclusions This study showed that, apart from individual factors such as parental education level, certain modifiable characteristics in the neighborhood environment (as measured by neighborhood observations) were associated with outdoor play among boys and girls of different age groups in The Netherlands. Local policy makers from different sectors can use these research findings in creating more activity-friendly neighborhoods for children.

Abstract Background As in clinical practice resources may be limited compared to experimental settings, translation of evidence-based lifestyle interventions into daily life settings is challenging. In this study we therefore evaluated the implementation of the APHRODITE lifestyle intervention for the prevention of type 2 diabetes in Dutch primary care. Based on this evaluation we discuss opportunities for refining intervention delivery. Methods A 2.5-year intervention was performed in 14 general practices in the Netherlands among individuals at high risk for type 2 diabetes (FINDRISC-score ≥ 13) (n = 479) and was compared to usual care (n = 446). Intervention consisted of individual lifestyle counselling by nurse practitioners (n = 24) and GPs (n = 48) and group-consultations. Drop-out and attendance were registered during the programme. After the intervention, satisfaction with the programme and perceived implementation barriers were assessed with questionnaires. Results Drop-out was modest (intervention: 14.6 %; usual care: 13.2 %) and attendance at individual consultations was high (intervention: 80-97 %; usual care: 86-94 %). Providers were confident about diabetes prevention by lifestyle intervention in primary care. Participants were more satisfied with counselling from nurse practitioners than from GPs. A major part of the GPs reported low self-efficacy regarding dietary guidance. Lack of counselling time (60 %), participant motivation (12 %), and financial reimbursement (11 %) were regarded by providers as important barriers for intervention implementation. Conclusions High participant compliance and a positive attitude of providers make primary care a suitable setting for diabetes prevention by lifestyle counselling. Results support a role for the nurse practitioner as the key player in guiding lifestyle modification. Further research is needed on strategies that could increase cost-effectiveness, such as more stringent criteria for participant inclusion, group-counselling, more tailor-made counselling and integration of screening and / or interventions for different disorders.

Abstract Background In the Netherlands, local authorities are required by law to develop local health memoranda, based on epidemiological analyses. The purpose of this study was to assess the actual use of these epidemiological reports by municipal health officials and associated factors that affect this use. Method Based on a conceptual framework, we designed a questionnaire in which we operationalized instrumental, conceptual, and symbolic use, the interaction between researchers and local health officials, and four clusters of barriers in this interaction process. We conducted an internet survey among 155 Dutch local health officials representing 35% of all Dutch municipalities. By means of multiple regression analyses, we gained insight into the related factors for each of the three types of research utilization. Results The results show that local health officials use epidemiological research more often in a conceptual than an instrumental or symbolic way. This can be explained by the complexity of the local policy process which is often linked to policies in other areas, and the various policy actors involved. Conceptual use was statistically associated with a presentation given by the epidemiologist during the policy process, the presence of obstructions regarding the report's accessibility, and the local official's personal belief systems and interests originating from different professional values and responsibilities. Instrumental and symbolic use increased with the involvement of local officials in the research process. Conclusions The results of this study provide a partial solution to understanding and influencing research utilization. The quantitative approach underpins earlier qualitative findings on this topic. The outcomes suggest that RPHS epidemiologists can use different strategies to improve research utilization. 'Blurring the boundaries', and the enhancement of interfaces between epidemiologists and local health officials, like direct interactions into each other's work processes, is expected to create better possibilities for optimizing research use.

Abstract Background In the Netherlands, as in many European countries, inequalities in health exist between people with a high and a low socioeconomic status (SES). From the perspective of the 'indirect selection hypothesis', this study was designed to expand our understanding of the role of Type D personality as an explanation of health inequalities. Methods Data came from two cross-sectional Dutch surveys among the general population (aged between 19 and 64 years, response 53.7%, n = 12,090). We analyzed the relative risks of low SES, assessed using education and income, and Type D personality, assessed using the Type D Scale-14 (DS14), for different outcomes regarding lifestyle-related risk factors and health, using multivariate Generalized Linear Models. Results Results showed that Type D personality was significantly associated with low SES (OR = 1.7 for both low education and low income). Moreover, the relative risks of Type D personality and low SES were significantly elevated for most adverse health outcomes, unconditionally as well as conditionally. Conclusion The cross-sectional design hinders the making of definite etiological inferences. Nevertheless, our findings suggest that Type D personality does not explain the socioeconomic health inequalities, but is a risk factor in addition to low SES. Prevention of adverse health outcomes in low SES populations may have more effect when it takes into account that persons with a low SES in combination with a Type D personality are at highest risk.

Abstract Background Although multi-sector policy is a promising strategy to create environments that stimulate physical activity among children, little is known about the feasibility of such a multi-sector policy approach. The aims of this study were: to identify a set of tangible (multi-sector) policy measures at the local level that address environmental characteristics related to physical activity among children; and to assess the feasibility of these measures, as perceived by local policy makers. Methods In four Dutch municipalities, a Delphi study was conducted among local policy makers of different policy sectors (public health, sports, youth and education, spatial planning/public space, traffic and transportation, and safety). In the first Delphi round, respondents generated a list of possible policy measures addressing three environmental correlates of physical activity among children (social cohesion, accessibility of facilities, and traffic safety). In the second Delphi round, policy makers weighted different feasibility aspects (political feasibility, cultural/community acceptability, technical feasibility, cost feasibility, and legal feasibility) and assessed the feasibility of the policy measures derived from the first round. The third Delphi round was aimed at reaching consensus by feedback of group results. Finally, one overall feasibility score was calculated for each policy measure. Results Cultural/community acceptability, political feasibility, and cost feasibility were considered most important feasibility aspects. The Delphi studies yielded 16 feasible policy measures aimed at physical and social environmental correlates of physical activity among children. Less drastic policy measures were considered more feasible, whereas environmental policy measures were considered less feasible. Conclusions This study showed that the Delphi technique can be a useful tool in reaching consensus about feasible multi-sector policy measures. The study yielded several feasible policy measures aimed at physical and social environmental correlates of physical activity among children and can assist local policy makers in designing multi-sector policies aimed at an activity-friendly environment for children.

Abstract Background Despite large-scale investments in mental health care in the community since the 1990 s, a trend towards reinstitutionalization has been visible since 2002. Since many mental health care providers regard this as an undesirable trend, the question arises: In the coming 5 years, what types of residence should be organized for people with mental health problems? The purpose of this article is to provide mental health care providers, public housing corporations, and local government with guidelines for planning organizational strategy concerning types of residence for people with mental health problems. Methods A scenario analysis was performed in four steps: 1) an exploration of the external environment; 2) the identification of key uncertainties; 3) the development of scenarios; 4) the translation of scenarios into guidelines for planning organizational strategy. To explore the external environment a document study was performed, and 15 semi-structured interviews were conducted. During a workshop, a panel of experts identified two key uncertainties in the external environment, and formulated four scenarios. Results The study resulted in four scenarios: 1) Integrated and independent living in the community with professional care; 2) Responsible healthcare supported by society; 3) Differentiated provision within the walls of the institution; 4) Residence in large-scale institutions but unmet need for care. From the range of aspects within the different scenarios, the panel was able to work out concrete guidelines for planning organizational strategy. Conclusions In the context of residence for people with mental health problems, the focus should be on investment in community care and their re-integration into society. A joint effort is needed to achieve this goal. This study shows that scenario analysis leads to useful guidelines for planning organizational strategy in mental health care.

Abstract Background Public health includes policy, practice and research but to sufficiently connect academic research, practice and public health policy appears to be difficult. Collaboration between policy, practice and research is imperative to obtaining more solid evidence in public health. However, the three domains do not easily work together because they emanate from three more or less independent 'niches'. Work cycles of each niche have the same successive steps: problem recognition, approach formulation, implementation, and evaluation, but are differently worked out. So far, the research has focused on agenda-setting which belongs to the first step, as expressed by Kingdon, and on the use of academic knowledge in policy makers' decision-making processes which belongs to the fourth step, as elaborated by Weiss. In addition, there are more steps in the policy-making process where exchange is needed. Method A qualitative descriptive research was conducted by literature search. We analyzed the four steps of the policy, practice and research work cycles. Next, we interpreted the main conflicting aspects as disconnections for each step. Results There are some conspicuous differences that strengthen the niche character of each domain and hamper integration and collaboration. Disconnections ranged from formulating priorities in problem statements to power roles, appraisal of evidence, work attitudes, work pace, transparency of goals, evaluation and continuation strategies and public accountability. Creating awareness of these disconnections may result in more compatibility between researchers, policy makers and practitioners. Conclusion We provide an analysis that can be used by public health services-related researchers, practitioners and policy makers to be aware of the risk for disconnections. A synthesis of the social, practical and scientific relevance of public health problems should be the starting point for a dialogue that seeks to establish a joint approach. To overcome the above mentioned disconnections, face-to-face encounters consistently emerge as the most efficient way to transfer knowledge, achieve higher quality and acknowledge mutual dependence. We recommend practice and policy based research networks to establish strong links between researchers, policy makers and practitioners to improve public health.

Abstract Background In the Netherlands municipalities are legally required to draw up a Local Health Policy Memorandum every four years. This policy memorandum should be based on (local) epidemiological research as performed by the Regional Health Services. However, it is largely unknown if and in what way epidemiological research is used during local policy development. As part of a larger study on knowledge utilization at the local level in The Netherlands, an analytical framework on the use of epidemiological research in local health policy development in the Netherlands is presented here. Method Based on a literature search and a short inventory on experiences from Regional Health Services, we made a description of existing research utilization models and concepts about research utilization. Subsequently we mapped different barriers in research transmission. Results The interaction model is regarded as the main explanatory model. It acknowledges the interactive and incremental nature of policy development, which takes place in a context and includes diversity within the groups of researchers and policymakers. This fits well in the dynamic and complex setting of local Dutch health policy. For the conceptual framework we propose a network approach, in which we "extend" the interaction model. We not only focus on the one-to-one relation between an individual researcher and policymaker but include interactions between several actors participating in the research and policy process. In this model interaction between actors in the research and the policy network is expected to improve research utilization. Interaction can obstruct or promote four clusters of barriers between research and policy: expectations, transfer issues, acceptance, and interpretation. These elements of interactions and barriers provide an actual explanation of research utilization. Research utilization itself can be measured on the individual level of actors and on a policy process level. Conclusion The developed framework has added value on existing models on research utilization because it emphasizes on the 'logic' of the context of the research and policy networks. The framework will contribute to a better understanding of the impact of epidemiological research in local health policy development, however further operationalisation of the concepts mentioned in the framework remains necessary.

Abstract Background Physical inactivity in children is a major health problem in The Netherlands as well as in many other Western countries. In addition to health promotion among parents and children, creating "active" neighbourhoods can contribute to the solution of this health problem. However, changing environmental characteristics is often the responsibility of policy sectors outside the Public Health domain. Therefore this project identifies and evaluates the possibilities of multi-sector policy measures to stimulate physical activity in children. Methods and design The project consists of quantitative as well as qualitative research methods and is conducted in four medium sized Dutch cities. To identify perceived environmental determinants of physical activity in children, a large scale health survey was conducted at 42 primary schools. Written questionnaires including topics on the children's physical activity behaviour (i.e. sports participation, outdoor play, active commuting, television watching and computer usage) and physical and social environmental characteristics were completed by 6,601 parents of children aged 3-13 years old and 3449 children aged 9-13 years old. In addition, 33 neighbourhood audits (systematic observations) were conducted to assess objective neighbourhood characteristics. Furthermore, a policy analysis was conducted in the four participating municipalities to provide an overview of the current local policy measures directed at stimulation of physical activity in children. Policy plans of six different policy sectors (Public Health, Sports, Education & Youth, Spatial Planning, Traffic & Transport, and Safety) were screened for their content on physical activity in children. In addition, semi-structured interviews were conducted with policy makers of each of these sectors to identify critical success factors in the development and realization of multi-sector policy plans aimed at stimulating physical activity in children. The results of all these research activities will be discussed with local policy makers during interactive workshop sessions in order to identify clear cut multi-sector policy measures that stimulate physical activity in children. Discussion This paper describes the study design of a project that focuses on multi-sector policy measures that stimulate physical activity in children. Next to extensive research into the environmental determinants of physical activity in children, much emphasis is placed on the translation of the research outcomes into concrete and feasible policy plans.

Background: The COVID-19 pandemic negatively affected child and adolescent mental health and at the end of the pandemic (April 2022) child mental health had not returned to pre-pandemic levels. We investigated whether this observed increase in mental health problems has continued, halted, or reversed after the end of the pandemic in children from the general population and in children in psychiatric care., Methods: We collected parent-reported and child-reported data at two additional post-pandemic time points (November/December 2022 and March/April 2023) in children (8-18 years) from two general population samples ( N  = 818-1056 per measurement) and one clinical sample receiving psychiatric care ( N  = 320-370) and compared these with data from before the pandemic. We collected parent-reported data on internalizing and externalizing problems with the Brief Problem Monitor and self-reported data on Anxiety, Depressive symptoms, Sleep-related impairments, Anger, Global health, and Peer relations with the Patient-Reported Outcomes Measurement Information System (PROMIS ® )., Results: In the general population, parents reported no changes in externalizing problems but did report higher internalizing problems post-pandemic than pre-pandemic ( p  < 0.001). Children also reported increased mental health problems post-pandemic, especially in anxiety and depression, to a lesser extent in sleep-related impairment and global health, and least in anger (all p s < 0.01). In the clinical sample, parents reported higher internalizing ( p  < 0.001), but not externalizing problems post-pandemic compared to the start of the pandemic. Children reported greatest increases in problems in anxiety, depression, and global health, to a lesser extent on sleep-related impairment, and least on anger (all p s < 0.05)., Conclusions: Child mental health problems in the general population are substantially higher post-pandemic compared to pre-pandemic measurements. In children in psychiatric care mental health problems have increased during the pandemic and are substantially higher post-pandemic than at the start of the pandemic. Longitudinal and comparative studies are needed to assess what the most important drivers of these changes are., Competing Interests: MB is supported by a European Research Council consolidator Grant (WELL‐BEING 771057 PI Bartels). The authors have declared that they have no competing or potential conflicts of interest. All authors have seen and approved the manuscript., (© 2023 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.)

Background: Classical galactosemia (CG), an inborn error of galactose metabolism, results in long-term complications including cognitive impairment and movement disorders, despite early diagnosis and dietary treatment. Two decades ago, lower motor-, cognitive- and social health related quality of life (HRQoL) was demonstrated in pediatric and adult patients. Since then, the diet has been relaxed, newborn screening was implemented and new international guidelines resulted in major changes in follow-up. The aim of this study was to assess HRQoL of CG by means of online self- and/or proxy-HRQoL-questionnaires focusing on the main areas of concern of CG (i.e. anxiety, depression, cognition, fatigue, social- and upper extremity function) within the patient-reported outcomes measurement information system (PROMIS®) and generic HRQoL-questionnaires (TAPQOL, TACQOL, TAAQOL)., Results: Data of 61 Dutch patients (aged 1-52 years) were collected and compared to available Dutch or US reference populations. On the PROMIS-questionnaires, children reported more fatigue (P = 0.044), lower function in upper extremities (P = 0.021), more cognitive difficulties (P = 0.055, d = 0.56) and higher anxiety (P = 0.063, d = 0.52) than reference children although the latter findings remained non-significant. Parents of CG patients reported lower quality of peer relationships of their children (P < 0.001). Both children and parents reported lower cognitive functioning (P = 0.005, P = 0.010) on the TACQOL. Adults reported on PROMIS domains lower cognitive functioning (P = 0.030), higher anxiety (P = 0.004) and more fatigue (P = 0.026). Cognitive difficulties were reported on the TAAQOL by adults (P < 0.001), as well as physical-, sleeping and social difficulties., Conclusions: CG remains to impact the HRQoL of pediatric and adult patients negatively on several domains including cognition, anxiety, motor function and fatigue. A lower social health was mainly reported by parents, and not by patients themselves. The Covid-19 pandemic might have amplified the results on anxiety although higher levels of anxiety fit pre-pandemic findings. The reported fatigue is a new finding in CG. Because the effect of lockdown fatigue could not be eliminated and fatigue is a frequent finding in patients with chronic disorders, future studies are warranted. Clinicians and researchers should be attentive to both pediatric and adult patients, and the age-dependent difficulties they might encounter., (© 2023. The Author(s).)

Background: The COVID-19 pandemic has had an acute impact on child mental and social health, but long-term effects are still unclear. We examined how child mental health has developed since the start of the COVID-19 pandemic up to 2 years into the pandemic (April 2022)., Methods: We included children (age 8-18) from two general population samples ( N  = 222-1333 per measurement and N  = 2401-13,362 for pre-covid data) and one clinical sample receiving psychiatric care ( N  = 334-748). Behavioral questionnaire data were assessed five times from April 2020 till April 2022 and pre-pandemic data were available for both general population samples. We collected parent-reported data on internalizing and externalizing problems with the Brief Problem Monitor and self-reported data on Anxiety, Depressive symptoms, Sleep-related impairments, Anger, Global health, and Peer relations with the Patient-Reported Outcomes Measurement Information System (PROMIS®)., Results: In all samples, parents reported overall increased internalizing problems, but no increases in externalizing problems, in their children. Children from the general population self-reported increased mental health problems from before to during the pandemic on all six PROMIS domains, with generally worst scores in April 2021, and scores improving toward April 2022 but not to pre-pandemic norms. Children from the clinical sample reported increased mental health problems throughout the pandemic, with generally worst scores in April 2021 or April 2022 and no improvement. We found evidence of minor age effects and no sex effects., Conclusions: Child mental health in the general population has deteriorated during the first phase of the COVID-19 pandemic, has improved since April 2021, but has not yet returned to pre-pandemic levels. Children in psychiatric care show worsening of mental health problems during the pandemic, which has not improved since. Changes in child mental health should be monitored comprehensively to inform health care and policy., Competing Interests: MB is supported by a European Research Council consolidator Grant (WELL‐BEING 771057 PI Bartels). The authors have declared that they have no competing or potential conflicts of interest., (© 2023 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.)

Background: In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement., Methods: The methodological framework of Arksey & O'Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated., Results: A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age., Discussion: This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects., (© 2023. The Author(s).)

Background: Patient reported outcome measures (PROMs) may be useful for patients with benign liver tumours and cysts (BLTC) to evaluate the impact of treatment and/or guide shared decision making. Yet, a set of PROMs relevant to patients with BLTC is currently unavailable. In this study, we selected a PROMs set for patients with BLTC., Methods: Potentially relevant patient reported outcomes (PROs) were selected by psychologist-researchers based on keywords used or suggested by participants of two virtual focus groups meetings consisting of thirteen female BLTC patients with a median age of 50 years. Subsequently, patients were asked to report their most relevant PROs. PROMs identified by systematic literature review and computerized adaptive tests (CATs) in the Patient-Reported Outcomes Measurement Information System (PROMIS) were considered in selecting the final PROMs set to assess relevant outcomes., Results: The most important PROs were: insecurity/anxiety (11/12 patients), pain (9/12 patients), fatigue (8/12 patients), and limitations in daily life (5/12 patients). The literature review included 23 studies, which used various generic and disease-specific PROMs, often not measuring (all) relevant PROs. The final selected PROMs set included numerical rating scales for pain, two questions on overall health and quality of life and four PROMIS CATs., Conclusions: A PROMs set generically and efficiently measuring outcomes relevant for patients with BLTC was developed and may be used in future research and clinical practice., (© 2022. The Author(s).)

(1) Background: Health-related quality of life (HRQoL) is lower in patients with chronic kidney disease (CKD) compared to the general population. In 2011, the KLIK PROM portal was implemented in the Emma Children's Hospital to monitor and discuss HRQoL in daily care. This study describes and assesses the implementation and use of the KLIK PROM portal in the pediatric nephrology department. (2) Methods: CKD patients (self-report, if 8-18 years of age) and their parents (proxy-report, if 1-8 years) were invited to complete HRQoL patient-reported outcome measures (PROMs): TNO-AZL Preschool children Quality Of Life (TAPQOL) or Pediatric Quality of Life Inventory for Children (PedsQL). The PROMs were completed before and discussed during outpatient consultations. The adaptation rate-the proportion of patients/parents who were invited and completed at least one PROM-was calculated. Reported HRQoL scores of CKD patients were compared to the general population. (3) Results: In total, 142 patients (proxy- and self-report) were invited, 112 patients completed at least one PROM (adaptation rate 79%). Patients ( n = 84 with informed consent for scientific use) with CKD reported lower HRQoL and HRQoL was more often impaired compared to the general Dutch population. (4) Conclusions: The implementation of KLIK was successful and its use is feasible for daily care. Using KLIK, HRQoL problems can be easily identified and monitored.

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics. Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics. Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses. Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves. Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics., Competing Interests: EG was employed by Evidera. The remaining 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., (Copyright © 2021 Bele, Teela, Zhang, Rabi, Ahmed, van Oers, Gibbons, Dunnewold, Haverman and Santana.)

Background: To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendations for visual feedback options for PROMIS CATs on individual item and domain score level as an evidence-based feedback recommendation for PROMIS CATs is lacking., Methods: Focus groups were held with clinicians who use the KLIK PROM portal. Literature-based feedback options were provided to initiate group discussion. Data was analyzed using thematic coding method. Additionally, a questionnaire was sent out to assess patients' (12-18y) and parents' (child 0-18y) preference for individual item feedback. Data was analyzed using descriptive statistics., Results: Six focus groups were held (N = 28 clinicians). Regarding individual item feedback, showing the complete item bank, with only responses to administered items in traffic light colors was preferred. For domain scores, line graphs were preferred, including numerical (T-)scores, reference and cut-off lines, and traffic light colors. Separate graphs per domain, ranked in order of importance and harmonization of directionality ('higher = better') were considered important. Questionnaire results (N = 31 patients/N = 131 parents) showed that viewing their own item responses was preferred above receiving no item feedback by 58.1% of the patients and 77.1% of the parents., Conclusions: Based on the outcomes and after discussion with the Dutch-Flemish PROMIS National Center, recommendations for PROMIS CAT feedback options were developed. PROMIS CATs can now be used in clinical practice to help clinicians monitor patient outcomes, while reducing the burden of completing PROMs for patients significantly., (© 2021. The Author(s).)

Background: The COVID-19 lockdown increases psychological problems in children and adolescents from the general population. Here we investigate the mental and social health during the COVID-19 lockdown in children and adolescents with pre-existing mental or somatic problems. Methods: We included participants (8-18 years) from a psychiatric ( N = 249) and pediatric ( N = 90) sample, and compared them to a general population sample ( N = 844). Measures were assessed during the first lockdown (April-May 2020) in the Netherlands. Main outcome measures were Patient-Reported Outcomes Measurement Information System (PROMIS®) domains: Global Health, Peer Relationships, Anxiety, Depressive Symptoms, Anger, and Sleep-Related Impairment, as reported by children and youth. Additionally, socio-demographic variables, COVID-19-related questions, changes in atmosphere at home from a parent and child perspective, and children's experiences of lockdown regulations were reported by parents. Results: On all measures except Global Health, the pediatric sample reported least problems. The psychiatric sample reported significantly more problems than the general population sample on all measures except for Anxiety and Peer Relationships. Having a COVID-19 affected friend/relative and a COVID-19 related change in parental work situation negatively moderated outcome, but not in the samples with pre-existing problems. All parents reported significant decreases in atmosphere at home, as did children from the general population. Conclusion: We observed significant differences in mental and social health between three child and adolescent samples during the COVID-19 pandemic lockdown and identified COVID-19-related factors influencing mental and social health., Competing Interests: JB has served as a member of the advisory board of Medice, Roche, Servier, Angelini and has received speaker fee from Takeda and Medice. The remaining 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., (Copyright © 2021 Zijlmans, Teela, van Ewijk, Klip, van der Mheen, Ruisch, Luijten, van Muilekom, Oostrom, Buitelaar, Hoekstra, Lindauer, Popma, Staal, Vermeiren, van Oers, Haverman and Polderman.)

Objective: To assess the psychometric properties of 8 pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) item banks in a clinical sample of children with juvenile idiopathic arthritis (JIA)., Methods: A total of 154 Dutch children (mean ± SD age 14.4 ± 3.0 years; range 8-18 years) with JIA completed 8 pediatric version 1.0 PROMIS item banks (anger, anxiety, depressive symptoms, fatigue, pain interference, peer relationships, physical function mobility, physical function upper extremity) twice and the Pediatric Quality of Life Inventory (PedsQL) and the Childhood Health Assessment Questionnaire (C-HAQ) once. Structural validity of the item banks was assessed by fitting a graded response model (GRM) and inspecting GRM fit (comparative fit index [CFI], Tucker-Lewis index [TLI], and root mean square error of approximation [RMSEA]) and item fit (S-X 2 statistic). Convergent validity (with PedsQL/C-HAQ subdomains) and discriminative validity (active/inactive disease) were assessed. Reliability of the item banks, short forms, and computerized adaptive testing (CAT) was expressed as the SE of theta (SE[θ]). Test-retest reliability was assessed using intraclass correlation coefficients (ICCs) and smallest detectable change., Results: All item banks had sufficient overall GRM fit (CFI >0.95, TLI >0.95, RMSEA <0.08) and no item misfit (all S-X 2 P > 0.001). High correlations (>0.70) were found between most PROMIS T scores and hypothesized PedsQL/C-HAQ (sub)domains. Mobility, pain interference, and upper extremity item banks were able to discriminate between patients with active and inactive disease. Regarding reliability, PROMIS item banks outperformed legacy instruments. Post hoc CAT simulations outperformed short forms. Test-retest reliability was strong (ICC >0.70) for all full-length item banks and short forms, except for the peer relationships item bank., Conclusion: The pediatric PROMIS item banks displayed sufficient psychometric properties for Dutch children with JIA. PROMIS item banks are ready for use in clinical research and practice for children with JIA., (© 2019 The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology.)

Introduction: Idiopathic nephrotic syndrome (INS) is characterised by a high relapse rate up to 80% after initial response to standard therapy with corticosteroids. Steroid toxicity is common and causes a great burden of disease that negatively influences the health-related quality of life (HRQoL). Recently, studies have shown that levamisole, an anthelminthic drug, significantly improves relapse-free survival in children with frequent relapses or steroid dependency. Compared with other steroid-sparing drugs, levamisole has relatively few side effects. We hypothesise that adding levamisole to standard therapy with corticosteroids in children with a first episode of INS will prevent relapses, decrease cumulative dosage of steroids used and improve HRQoL. This paper presents the study protocol for the LEARNS study (LEvamisole as Adjuvant therapy to Reduce relapses of Nephrotic Syndrome)., Methods and Analysis: An international, double-blind, placebo-controlled randomised trial will be conducted in 20 participating hospitals in the Netherlands and Belgium. Participants (n=92) with a first episode of INS, aged 2-16 years, who achieve remission after 4 weeks of oral prednisolone will be randomly assigned (1:1) to receive either levamisole 2.5 mg/kg alternate day or placebo added to prednisolone (18-week tapering schedule) for a total of 24 weeks. Follow-up will be until 2 years after first presentation. Additionally, parents and/or children will fill out five HRQoL questionnaires. Primary outcome of the LEARNS study is occurrence of relapses within 12 months after first presentation. Secondary outcomes include time to first relapse, cumulative steroid dose after 2 years, safety parameters and quality of life scores., Ethics and Dissemination: The trial was approved by the Medical Ethical Committee. Results of the study will be published in a peer-reviewed journal., Trial Registration Number: NL6826, 2017-001025-41., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Background: Quality of life (QoL) is a prominent outcome measure in mental health. However, conventional methods for QoL assessment rely heavily on language-based communication and therefore may not be optimal for all individuals with severe mental health problems. In addition, QoL assessment is usually based on a fixed number of life domains. This approach conflicts with the notion that QoL is influenced by individual values and preferences. A digital assessment app facilitates both the accessibility and personalization of QoL assessment and may, therefore, help to further advance QoL assessment among individuals with severe mental health problems., Objective: This study focused on the development of an innovative, visual, and personalized QoL assessment app for people with severe mental health problems: the QoL-ME., Methods: This study targeted 3 groups of individuals with severe mental health problems: (1) people with psychiatric problems, (2) people treated in forensic psychiatry, and (3) people who are homeless. A group of 59 participants contributed to the 6 iterations of the cocreative development of the QoL-ME. In the brainstorming stage, consisting of the first iteration, participants' previous experiences with questionnaires and mobile apps were explored. Participants gave their feedback on initial designs and wireframes in the second to fourth iterations that made up the design stage. In the usability stage that comprised the final 2 iterations, the usability of the QoL-ME was evaluated., Results: In the brainstorming stage, participants stressed the importance of privacy and data security and of receiving feedback when answering questionnaires. Participants in the design stage indicated a preference for paging over scrolling, linear navigation, a clean and minimalist layout, the use of touchscreen functionality in various modes of interaction, and the use of visual analog scales. The usability evaluation in the usability stage revealed good to excellent usability., Conclusions: The cocreative development of the QoL-ME resulted in an app that corresponds to the preferences of participants and has strong usability. Further research is needed to evaluate the psychometric quality of the QoL-ME and to investigate its usefulness in practice., (©David C Buitenweg, Ilja L Bongers, Dike van de Mheen, Hans AM van Oers, Chijs van Nieuwenhuizen. Originally published in JMIR Mental Health (http://mental.jmir.org), 28.03.2019.)

Background: Mucopolysaccharidosis type III (MPS III or Sanfilippo syndrome) is a lysosomal storage disease resulting in progressive neurocognitive decline during childhood and early demise. Its diagnosis may have a great impact on parents, potentially leading to psychosocial problems such as anxiety, depression, parental distress, and posttraumatic stress., Methods: Twenty-six mothers and 19 fathers of 34 Dutch MPS III patients completed the "Hospital Anxiety and Depression Scale" (HADS), the "Distress Thermometer for Parents" (DT-P), and the "Self-Rating Scale for Posttraumatic Stress Disorders" (SRS-PTSD). Independent-sample T-tests and chi-square tests were used to assess differences between parents of MPS III patients and reference groups regarding anxiety and depression (HADS), distress (DT-P), and posttraumatic stress (SRS-PTSD)., Results: Mothers met the criteria for clinically relevant anxiety (50%) and depression (34.6%) more frequently compared to reference mothers (p = 0.001). Fathers more often met the criteria for clinically relevant depression (36.8%) compared to reference fathers (p = 0.022). Clinically relevant distress was highly prevalent in mothers (84.6%) and fathers (68.4%) of MPS III patients compared to reference parents (p < 0.01). Finally, the prevalence of PTSD was strikingly higher in both mothers (26.9%) and fathers (15%) than reported in the general Dutch population (respectively, p < 0.001 and p < 0.05)., Conclusions: We report a clinically relevant impact of parenting an MPS III patient on psychosocial functioning, which is demonstrated by high levels of anxiety, depression, distress, and a remarkably high prevalence of PTSD. Structural monitoring of the psychosocial functioning of MPS III parents is therefore essential and may be beneficial for the whole family.

Background: Identification of children at risk for psychosocial problems is important to be able to provide supportive and tailored care at an early stage. Due to its brevity and wide age range, the Strengths and Difficulties Questionnaire (SDQ) Parent Form is an appropriate instrument for use in paediatric clinical practice as it facilitates assessment of psychosocial functioning from young childhood into adulthood. The aim of the present study was to provide Dutch normative data for the SDQ Parent Form., Methods: A sample of 1947 parents with children aged 2-18 years was drawn from a large panel of a Dutch research agency, stratified on Dutch key demographics of the parents. The SDQ Parent Form assesses the child's Emotional symptoms, Conduct problems, Hyperactivity-Inattention, Peer problems and Prosocial behaviour. Summary scores can be calculated: Internalising, Externalising and Total difficulties. Internal consistency (Cronbach's alpha coefficient) and normative scores (mean, median, clinical cut-off scores) of the SDQ- Parent Form were calculated in four age-groups 2-3, 4-5, 6-11 and 12-18 years. Gender differences were tested with independent t-tests., Results: A total of 1174 parents (60.3%) completed the SDQ. In the age-groups 2-3 and 4-5, norm scores are not available for Conduct problems and Peer problems due to insufficient internal consistency. In addition, in age-group 2-3, norm scores for Emotional symptoms and Internalising are not available because of insufficient internal consistency. In the age-groups 6-11 and 12-18, norm scores are available for all scales, with Cronbach's alpha coefficients 0.53-0.86. The comparison by gender revealed that boys had more behavioural problems than girls (0.000 < p < 0.048), most prevalent for Hyperactivity-Inattention, Peer Problems, Prosocial behaviour, Externalising and Total Difficulties., Conclusions: Dutch normative data by age-group and gender are now available for parent-reported SDQ scores in children aged 2-18 years. Due to insufficient internal consistency, normative scores for 2-5 year-old children could not be presented for several SDQ scales. Yet, the SDQ Total score provides a reliable indication of the psychosocial functioning of younger children. In case of high Total scores in children younger than 6 years, alternatively to scale scores, the answers on the individual items could yield useful clinical information about the child's problems.

Background: The purpose of this study is to provide Dutch normative data and to assess internal consistency and known-groups validity for the TNO AZL Preschool Children Quality of Life (TAPQOL) and the acute version of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) in Dutch young children aged 0-7 years., Methods: Participants were selected from a panel of a large Dutch market research agency. A sample of 794 parents (response rate 61%, 39% fathers) of children (53% boys) from the general Dutch population, completed an electronic version of the TAPQOL (N = 227 infants aged 0-1 years) or PedsQL 4.0 (N = 293 toddlers aged 2-4 years and N = 274 young children aged 5-7 years)., Results: Except for the 'stomach' scale (α = .39), the TAPQOL showed acceptable to excellent internal consistency (α = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2-4 years (α = .60-.88) and in children aged 5-7 years (α = .76-.90). Children with a chronic health condition had lower scores than healthy children on 3 out of 12 domains of the TAPQOL (p = .001-.013) and on 2 out of 6 domains of the PedsQL 4.0 for children aged 2-4 years (p = .016-.04). The PedsQL 4.0 differentiated on all domains (p < .05) between children aged 5-7 years with and without a chronic health condition., Conclusion: In Dutch children aged 0-7 years old, HRQoL can be relialy measured with the TAPQOL and the PedsQL 4.0. However, it remains unclear whether these HRQoL instruments can distinguish between healthy children and children with a chronic health condition under the age of 5.

Background: Facilitating and enhancing interaction between stakeholders involved in the policymaking process to stimulate collaboration and use of evidence, is important to foster the development of effective Health Enhancing Physical Activity (HEPA) policies. Performing an analysis of real-world policymaking processes will help reveal the complexity of a network of stakeholders. Therefore, the main objectives were to unravel the stakeholder network in the policy process by conducting three systems analyses, and to increase insight into the similarities and differences in the policy processes of these European country cases., Methods: A systems analysis of the local HEPA policymaking process was performed in three European countries involved in the 'REsearch into POlicy to enhance Physical Activity' (REPOPA) project, resulting in three schematic models showing the main stakeholders and their relationships. The models were used to compare the systems, focusing on implications with respect to collaboration and use of evidence in local HEPA policymaking. Policy documents and relevant webpages were examined and main stakeholders were interviewed., Results: The systems analysis in each country identified the main stakeholders involved and their position and relations in the policymaking process. The Netherlands and Denmark were the most similar and both differed most from Romania, especially at the level of accountability of the local public authorities for local HEPA policymaking. The categories of driving forces underlying the relations between stakeholders were formal relations, informal interaction and knowledge exchange., Conclusions: A systems analysis providing detailed descriptions of positions and relations in the stakeholder network in local level HEPA policymaking is rather unique in this area. The analyses are useful when a need arises for increased interaction, collaboration and use of knowledge between stakeholders in the local HEPA network, as they provide an overview of the stakeholders involved and their mutual relations. This information can be an important starting point to enhance the uptake of evidence and build more effective public health policies.

Background: The Dutch Public Health Status and Forecasts report (PHSF Report) integrates research data and identifies future trends affecting public health in the Netherlands. To investigate how PHSF contributions to health policy can be enhanced, we analysed the development process whereby the PHSF Report for 2010 was produced (PHSF-2010)., Method: To collect data, a case study approach was used along the lines of Contribution Mapping including analysis of documents from the PHSF-2010 process and interviews with actors involved. All interviews were recorded and transcribed ad verbatim and coded using an inductive code list., Results: The PHSF-2010 process included activities aimed at alignment between researchers and policy-makers, such as informal meetings. However, we identified three issues that are easily overlooked in knowledge development, but provide suggestions for enhancing contributions: awareness of divergent; continuously changing actor scenarios; vertical alignment within organizations involved and careful timing of draft products to create early adopters., Conclusion: To enhance the contributions made by an established public health report, such as the PHSF Report, it is insufficient to raise the awareness of potential users. The knowledge product must be geared to policy-makers' needs and must be introduced into the scenarios of actors who may be less familiar. The demand for knowledge product adaptations has to be considered. This requires continuous alignment efforts in all directions: horizontal and vertical, external and internal. The findings of this study may be useful to researchers who aim to enhance the contributions of their knowledge products to health policy., (© The Author 2016. Published by Oxford University Press on behalf of the European Public Health Association.)

Background: To improve knowledge utilization in policymaking, alignment between researchers and policymakers during knowledge production is essential, but difficult to maintain. In three previously reported case studies, we extensively evaluated complex research projects commissioned by policymakers to investigate how alignment is achieved in a research process and to discover ways to enhance knowledge contributions to health policy. In the present study, we investigated how the findings of these three research projects could be integrated into a practical tool for researchers to enhance their contribution to evidence-based policy., Methods: A cross-case analysis was conducted to integrate the findings of the evaluation of the three research projects and to identify important alignment areas in these projects. By means of an iterative process, we prepared a tool that includes reflection questions for researchers. The "Research for Policy" tool was tested with input from the project managers of three new research projects. Based on the findings, the final version of the Research for Policy tool was prepared., Results: By cross-case analysis of the three case studies, the following important alignment areas were identified: the goal, quality, relevance, timing, and presentation of research, the tasks and authorities of actors, the consultative structure and vertical alignment within organizations, and the organizational environment. The project managers regarded the Research for Policy tool as a useful checklist for addressing the important alignment areas in a research project. Based on their feedback, the illustrative examples from the case studies were added to the reflection questions. The project managers suggested making the tool accessible not only to researchers but also to policymakers. The format of the Research for Policy tool was further adjusted to users' needs by adding clickable links., Conclusions: Alignment between research and policymaking requires continuous efforts and a clear understanding of process issues in the research project. The Research for Policy tool offers practical alignment guidance and facilitates reflection on process issues, which supports researchers in aligning with policymakers and in acting in a context-sensitive way.

Background: Despite the acknowledged value of an EU health information system (EU-HISys) and the many achievements in this field, the landscape is still heavily fragmented and incomplete. Through a systematic analysis of the opinions and valuations of public health stakeholders, this study aims to conceptualize key features of an EU-HISys., Methods: Public health professionals and policymakers were invited to participate in a concept mapping procedure. First, participants (N = 34) formulated statements that reflected their vision of an EU-HISys. Second, participants (N = 28) rated the relative importance of each statement and grouped conceptually similar ones. Principal Component and cluster analyses were used to condense these results to EU-HISys key features in a concept map. The number of key features and the labelling of the concept map were determined by expert consensus., Results: The concept map contains 10 key features that summarize 93 statements. The map consists of a horizontal axis that represents the relevance of an 'organizational strategy', which deals with the 'efforts' to design and develop an EU-HISys and the 'achievements' gained by a functioning EU-HISys. The vertical axis represents the 'professional orientation' of the EU-HISys, ranging from the 'scientific' through to the 'policy' perspective. The top ranking statement expressed the need to establish a system that is permanent and sustainable. The top ranking key feature focuses on data and information quality., Conclusions: This study provides insights into key features of an EU-HISys. The results can be used to guide future planning and to support the development of a health information system for Europe., (© The Author 2015. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.)

Background: Contemporary research should increasingly be carried out in the context of application. Nowotny called this new form of knowledge production Mode-2. In line with Mode-2 knowledge production, the Dutch government in 2006 initiated the so-called Academic Collaborative Centres (ACC) for Public Health. The aim of these ACCs is to build a regional, sustainable knowledge-sharing network to deliver socially robust knowledge. The present study aims to highlight the enabling and constraining push and pull factors of these ACCs in order to assess whether the ACCs are able to build and strengthen a sustainable integrated organizational network between public health policy, practice, and research., Methods: Our empirical analysis builds on a mixed methods design. Quantitative data was derived from records of a survey sent to all 11 ACCs about personnel investments, number and nature of projects, and earning power. Qualitative data was derived from 21 in-depth interviews with stakeholders involved. The interviews were tape-recorded, transcribed, and manually coded as favourable or unfavourable pull or push factors., Results: The extra funding appeared to be the most enabling push factor. The networks secured external grants for about 150 short- and long-term Mode-2 knowledge production projects in the past years. Enabling pull factors improved, especially the number of policy-driven short-term research projects. Exchange agents were able to constructively deal with the constraining push factors, like university's publication pressure and budget limitations. However, the constraining pull factors like local government's involvement and their low demand for scientific evidence were difficult to overcome., Conclusions: A clear improvement of the organizational networks was noticed whereby the ACC's were pushed rather than pulled. Efforts are needed to increase the demand for scientific and socially robust evidence from policymakers and to resolve the regime differences between the research and policy systems, in order to make the bidirectionality of the links sustainable.

Background: There is much evidence that parents have an influence on the alcohol use of their children. However, in general the relationship is rather weak. A reason for this small association may be due to the fact that adolescents are a heterogeneous group and that, consequently, the association between the quality of the parent-child relationship and alcohol use varies for diverse subgroups, resulting in an overall small effect. In an earlier study we found five different segments for adolescents regarding their attitude towards alcohol. This article reports on a study into the differences between these segments with respect to the quality of the parent-child relationship and parental attitudes to alcohol. Moreover, we examined segment-specific associations of the quality of the parent-child relationship and alcohol use., Methods: This study used data from a survey held among adolescents aged 12 to 18. A random sample of 59,073 adolescents was drawn from 67 municipalities in the south of the Netherlands. To assign respondents into one of the five segments, a questionnaire of 28 items concerning alcohol and approval from others from the original segmenting study was included in the internet version. Therefore, only the results of the internet version (N = 12,375 adolescents) were analysed., Results: Both the quality of the parent-child relationship and the attitude of the parents towards the drinking behaviour of their children differed between the segments. Significant associations were found between the quality of the parent-child relationship and life-time and recent alcohol use and binge drinking. The interaction between the quality of the parent-child relationship and the segments was only significant for binge drinking., Conclusions: The quality of the parent-child relationship seemed to be most strongly associated with life-time alcohol use, suggesting that parents appear to play the most important role in the prevention of alcohol use. Moreover, the results showed segment-specific associations between the quality of the parent-child relationship and binge drinking, indicating that the role of parents in heavy drinking is different for the various segments.

Background: A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA., Methods: Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses., Results: 155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV., Conclusion: The HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.

Background: An earlier study using social marketing and audience segmentation distinguished five segments of Dutch adolescents aged 12-18 years based on their attitudes towards alcohol. The present, qualitative study focuses on two of these five segments ('ordinaries' and 'ordinary sobers') and explores the attitudes of these two segments towards alcohol, and the role of parents and peers in their alcohol use in more detail., Methods: This qualitative study was conducted in the province of North-Brabant, the Netherlands. With a 28-item questionnaire, segments of adolescents were identified. From the ordinaries and ordinary sobers who were willing to participate in a focus group, 55 adolescents (30 ordinaries and 25 ordinary sobers) were selected and invited to participate. Finally, six focus groups were conducted with 12-17 year olds, i.e., three interviews with 17 ordinaries and three interviews with 20 ordinary sobers at three different high schools., Results: The ordinaries thought that drinking alcohol was fun and relaxing. Curiosity was an important factor in starting to drink alcohol. Peer pressure played a role, e.g., it was difficult not to drink when peers were drinking. Most parents advised their child to drink a small amount only. The attitude of ordinary sobers towards alcohol was that drinking alcohol was stupid; moreover, they did not feel the need to drink. Most parents set strict rules and prohibited the use of alcohol before the age of 16., Conclusions: Qualitative insight into the attitudes towards alcohol and the role played by parents and peers, revealed differences between ordinaries and ordinary sobers. Based on these differences and on health education theories, starting points for the development of interventions, for both parents and adolescents, are formulated. Important starting points for interventions targeting ordinaries are reducing perceived peer pressure and learning to make one's own choices. For the ordinary sobers, an important starting point includes enabling them to express to others that they do not feel the need to drink alcohol. Starting points for parents include setting strict rules, restricting alcohol availability at home and monitoring their child's alcohol use.

Background: It often remains unclear to investigators how their research contributes to the work of the commissioner. We initiated the 'Risk Model' case study to gain insight into how a Dutch National Institute for Public Health and the Environment (RIVM) project and its knowledge products contribute to the commissioner's work, the commissioner being the Health Care Inspectorate. We aimed to identify the alignment efforts that influenced the research project contributions. Based on the literature, we expected interaction between investigators and key users to be the most determining factor for the contributions of a research project., Methods: In this qualitative case study, we analyzed the alignment efforts and contributions in the Risk Model project by means of document analysis and interviews according to the evaluation method Contribution Mapping. Furthermore, a map of the research process was drafted and a feedback session was organized. After the feedback session with stakeholders discussing the findings, we completed the case study report., Results: Both organizations had divergent views on the ownership of the research product and the relationship between RIVM and the Inspectorate, which resulted in different expectations. The RIVM considered the use of the risk models to be problematic, but the inspectors had a positive opinion about its contributions. Investigators, inspectors, and managers were not aware of these remarkably different perceptions. In this research project, we identified six relevant categories of both horizontal alignment efforts (between investigators and key users) as well as vertical alignment efforts (within own organization) that influenced the contributions to the Inspectorate's work., Conclusions: Relevant alignment efforts influencing the contributions of the project became manifest at three levels: the first level directly relates to the project, the second to the organizational environment, and the third to the formal and historical relationship between the organizations. Both external and internal alignments influence the contributions of a research project. Based on the findings, we recommend that research institutes invest in a reflective attitude towards the social aspects of research projects at all levels of the organization and develop alignment strategies to enhance the contributions of research.

Background: The purpose of this study is to provide Dutch norm data and to assess internal consistency and construct validity for the Pediatric Quality of Life Inventory Young Adult Generic Core Scales (PedsQL&#95;YA) in Dutch young adults aged 18-30 years., Methods: A sample of 649 young adults from the general Dutch population aged 18-30 years, stratified by age, sex, marital status and education, completed a socio-demographic questionnaire and the Dutch version of the PedsQL&#95;YA online. Internal consistency of the PedsQL&#95;YA scales was determined with Cronbach's alphas. Norm scores were obtained by calculating the mean PedsQL scale scores by gender, age and health status. Differences in scale scores were analyzed for gender, age and health status (construct validity) using two-sample t-tests and effect sizes were calculated. Construct validity was determined by testing differences in PedsQL scores between healthy young adults and young adults with chronic health conditions., Results: All scales of the PedsQL&#95;YA showed satisfactory to excellent internal consistency, with Cronbach's alphas between .77 and .94. Men reported higher scores (indicating better HRQOL) than women on all scales (p < .01), except for school/work functioning. No age differences were found. Young adults with chronic health conditions scored lower on all scales (p < .001) than healthy young adults, indicating good construct validity. Effect sizes varied from medium to large., Conclusions: The Dutch version of the PedsQL&#95;YA has adequate psychometric properties. With the availability of reliable norm data, the PedsQL&#95;YA can be used as a tool in the evaluation of health related quality of life in healthy young adults and those with a chronic health condition.

Background: Despite the favorable effects of behavior change interventions on diabetes risk, lifestyle modification is a complicated process. In this study we therefore investigated opportunities for refining a lifestyle intervention for type 2 diabetes prevention, based on participant perceptions of behavior change progress., Methods: A 30 month intervention was performed in Dutch primary care among high-risk individuals (FINDRISC-score ≥ 13) and was compared to usual care. Participant perceptions of behavior change progress for losing weight, dietary modification, and increasing physical activity were assessed after18 months with questionnaires. Based on the response, participants were categorized as 'planners', 'initiators' or 'achievers' and frequencies were evaluated in both study groups. Furthermore, participants reported on barriers for lifestyle change., Results: In both groups, around 80% of all participants (intervention: N = 370; usual care: N = 322) planned change. Except for reducing fat intake (p = 0.08), the number of initiators was significantly higher in the intervention group than in usual care. The percentage of achievers was high for the dietary and exercise objectives (intervention: 81-95%; usual care: 83-93%), but was lower for losing weight (intervention: 67%; usual care: 62%). Important motivational barriers were 'I already meet the standards' and 'I'm satisfied with my current behavior'. Temptation to snack, product taste and lack of time were important volitional barriers., Conclusions: The results suggest that the intervention supports participants to bridge the gap between motivation and action. Several opportunities for intervention refinement are however revealed, including more stringent criteria for participant inclusion, tools for (self)-monitoring of health, emphasis on the 'small-step-approach', and more attention for stimulus control., Trial Registration: Netherlands Trial Register: NTR1082.

Background: Alcohol education aims to increase knowledge on the harm related to alcohol, and to change attitudes and drinking behaviour. However, little (lasting) evidence has been found for alcohol education, in changing alcohol-related attitudes and behaviour. Social marketing uses marketing techniques to achieve a social or healthy goal, and can be used in alcohol education. Social marketing consists of eight principles: customer orientation, insight, segmentation, behavioural goals, exchange, competition, methods mix, and is theory based. This review investigates the application of social marketing in alcohol prevention interventions, and whether application of social marketing influences alcohol-related attitudes or behaviour., Method: A literature search was conducted in PubMed, PsychInfo, Cochrane and Scopus. Inclusion criteria were that original papers had to describe the effects of an alcohol prevention intervention developed according to one or more principles of social marketing. No limits were set on the age of the participants or on the kind of alcohol prevention intervention. The abstracts of the 274 retrieved studies were reviewed and the full texts of potentially relevant studies were screened., Results: Six studies met the inclusion criteria and were included in this review. These six studies showed associations for the application of social marketing techniques on alcohol-related attitudes or behaviour; one study relates to participation in a drinking event, four to alcohol drinking behaviour, two to driving a car while under the influence of alcohol, two to recognition of campaign messages or campaign logo, and one to awareness of the campaign. However, no associations were also found. In addition, the studies had several limitations related to a control group, response rate and study methodology., Conclusion: Based on this review, the effect of applying the principles of social marketing in alcohol prevention in changing alcohol-related attitudes or behaviour could not be assessed. More research, with a good quality methodology, like using a randomized control trial and measuring short, medium, and long-term effects, is required on this topic. Policy implications are discussed.

Background: There is limited evidence on the causality of previously observed associations between neighborhood traffic safety and physical activity (PA). This study aims to contribute to this evidence by assessing the extent to which changes over time in neighborhood traffic safety were associated with PA., Methods: Data were accessed from the national survey Netherlands Housing Research for 2006 and 2009. The two samples of in total 57,092 Dutch residents aged 18-84 years lived in 320 neighbourhoods. Using multi-level hurdle models, the authors assessed whether the odds of being physically active and the mean hours of PA among active people (in 2009) were related to the levels of neighborhood traffic safety (in 2006) and changes in the levels of neighborhood traffic safety (between 2006 and 2009). Next, we examined if these associations varied according to gender, age, and employment status., Results: Higher levels of neighborhood traffic safety were associated with higher odds of being active (OR 1.080 (1.025-1.139)). An increase in levels of neighborhood traffic safety was associated with increased odds of being active (OR 1.060 (1.006-1.119)). This association was stronger among women, people aged 35 to 59, and those who were gainfully employed. Neither levels of traffic safety nor changes in these levels were associated with the mean hours of PA among people who were physically active (OR 0.997 (0.975-1.020); OR 1.001 (0.978-1.025), respectively)., Conclusion: Not only levels of neighborhood traffic safety, but also increases in neighborhood traffic safety were related to increased odds of being active. This relationship supports claims for a causal relationship between neighborhood traffic safety and PA.

Background: In the Netherlands, municipal health assessments are carried out by 28 Regional Health Services, serving 418 municipalities. In the absence of guidelines, regional public health reports were developed in two pilot regions on the basis of the model and experience of national health reporting. Though they were well received and positively evaluated, it was not clear which specific characteristics determined 'good public health reporting'. Therefore, this study was set up to develop a theoretical framework for the quality of regional public health reporting in The Netherlands., Methods: Using concept mapping as a standardized tool for conceptualization, 35 relevant reporting experts formulated short statements in two different brainstorming sessions, describing specific quality criteria of regional public health reports. After the removal of duplicates, the list was supplemented with international criteria, and the statements were sent to each participant for rating and sorting. The results were processed statistically and represented graphically. The output was discussed and interpreted, leading to the final concept map., Results: The final concept map consisted of 97 criteria, grouped into 13 clusters, and plotted in two dimensions: a 'product' dimension, ranging from 'production' to 'content', and a 'context' dimension, ranging from 'science' to 'policy'. The three most important clusters were: (i) 'solution orientation', (ii) 'policy relevance' and (iii) 'policy impact'., Conclusion: This study provided a theoretical framework for the quality of regional public health reporting, indicating relevant domains and criteria. Further work should translate domains and criteria into operational indicators for evaluating regional public health reports.

The objective of this study was to examine the relationship between negative life events and chronic stressors and drinking behaviour. Data suggested that some life events (getting divorced) and some chronic stressors (financial difficulties, unfavourable marital status, and unfavourable employment status) were positively related to abstinence among men and women. Furthermore, some life events (being a victim of a crime, decrease in financial position, divorce or reporting two or more life events) were positively associated with heavy drinking among men. Chronic stressors, such as unfavourable marital status and unfavourable employment status, were also related to heavy drinking among both men and women. Results presented here suggest that people under stressful conditions are more likely to either abstain or drink heavily rather than to drink lightly or moderately.