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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: Steroid-sensitive nephrotic syndrome (SSNS) is associated with a relapsing-remitting course that can be stressful for parents. As little is known of parental distress at the first onset of SSNS, this study aims to describe parental distress and everyday problems in mothers and fathers of a child with newly diagnosed SSNS participating in a randomized controlled trial of levamisole added to corticosteroids., Methods: To assess distress, the Distress Thermometer for Parents (DT-P) was used, which includes questions on distress (thermometer score 0-10, ≥ 4 "clinical distress") and presence of everyday problems in six domains: practical, social, emotional, physical, cognitive, and parenting. The DT-P was completed 4 weeks after the onset of SSNS. Total sum and individual items of everyday problems were compared with reference data from mothers and fathers of the Dutch general population., Results: There was no difference in clinically elevated parental distress between SSNS mothers (n = 37) and fathers (n = 25) and reference parents. Compared to reference fathers, fathers of a child with SSNS scored significantly higher on emotional problems (P = 0.030), while mothers experienced more parenting problems (P = 0.002). Regression analyses showed that lower parental age and having a girl with SSNS were significantly associated with more practical problems and higher distress thermometer scores, respectively., Conclusions: Four weeks after onset, SSNS mothers and fathers experience equal distress as reference parents. However, both parents endorsed significantly more everyday problems. Therefore, monitoring parental distress, even in the first weeks of the disease, could contribute to timely interventions and prevent worsening of problems., Clinical Trial Registry: Dutch Trial Register ( https://onderzoekmetmensen.nl/en/trial/27331 ). A higher resolution version of the Graphical abstract is available as Supplementary information., (© 2023. The Author(s).)

This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2-16 years) and/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (> 1 SD below the mean of the reference group) or SDQ clinical scores (< 10 th and > 90 th percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8-18 years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (> 45%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2-7 years and the reference group, except for higher scores on social functioning (5-7 years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and/or EBD.   Conclusion: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms.   Clinical trial registry: Netherlands Trial Register ( https://trialsearch.who.int/ ; NTR7013), date of registration: 02 June 2018. What is Known: •  Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome. What is New: •  HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population. • To what extent HRQoL and EBD are affected depends on the age of the patient., (© 2023. The Author(s).)

The aim of the study was to assess internalizing problems before and during the pandemic with data from Dutch consortium Child and adolescent mental health and wellbeing in times of the COVID-19 pandemic, consisting of two Dutch general population samples (GS) and two clinical samples (CS) referred to youth/psychiatric care. Measures of internalizing problems were obtained from ongoing data collections pre-pandemic (N GS  = 35,357; N CS  = 4487) and twice during the pandemic, in Apr-May 2020 (N GS  = 3938; clinical: N CS  = 1008) and in Nov-Dec 2020 (N GS  = 1489; N CS  = 1536), in children and adolescents (8-18 years) with parent (Brief Problem Monitor) and/or child reports (Patient-Reported Outcomes Measurement Information System ® ). Results show that, in the general population, internalizing problems were higher during the first peak of the pandemic compared to pre-pandemic based on both child and parent reports. Yet, over the course of the pandemic, on both child and parent reports, similar or lower levels of internalizing problems were observed. Children in the clinical population reported more internalizing symptoms over the course of the pandemic while parents did not report differences in internalizing symptoms from pre-pandemic to the first peak of the pandemic nor over the course of the pandemic. Overall, the findings indicate that children and adolescents of both the general and clinical population were affected negatively by the pandemic in terms of their internalizing problems. Attention is therefore warranted to investigate long-term effects and to monitor if internalizing problems return to pre-pandemic levels or if they remain elevated post-pandemic., (© 2022. The Author(s).)

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).)

Purpose: The study aimed to compare the psychosocial development of young adult survivors of childhood cancer (YACCS) with a norm group of young adults from the general population., Methods: From 2017 to 2020, 558 YACCS (18-30 years, 51% female, 10.9% CNS cancer) who participated in the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort (diagnosed 1963-2001) part 2 completed the Course of Life Questionnaire (CoLQ), assessing the achievement of milestones. Items were grouped into the scales autonomy, psychosexual, and social development. Differences between YACCS and norm group were examined with ANOVA and Cohen's d (CoLQ scales) and with logistic regression analysis and odds ratio (OR) (CoLQ items), for the total group and YACCS of CNS cancer., Results: The total group of YACCS did not report a less favorable psychosocial development than the norm group. YACCS of CNS cancer scored lower than the norm group (p < 0.001) on the scales autonomy (d = - 0.36) and psychosexual (d = - 0.46). Additionally, on half of the items of autonomy (0.25 ≤ OR ≤ 0.34), psychosexual (0.30 ≤ OR ≤ 0.48), and social (0.23 ≤ OR ≤ 0.47) development, YACCS of CNS cancer were less likely (p < 0.01) than the norm group to have achieved the milestones., Conclusion: Overall, psychosocial development of YACCS was as favorable as the norm, but YACCS of CNS cancer were at risk of an unfavorable psychosocial development in all domains. Monitoring psychosocial development should be included in the standards of psychosocial care, especially for CNS cancer patients and survivors, to be able to trace delay. Personalized interventions should be offered to improve the psychosocial development in an early stage., (© 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: The KLIK Patient Reported Outcome Measures (PROM) portal ( www.hetklikt.nu ) has been implemented since 2011 in clinical practice in over 20 Dutch hospitals. Patients and/or parents complete PROMs before the outpatient consultation and answers are subsequently discussed by clinicians during consultation. This study aims to provide insight into patients' and parents' perspective on the use of the KLIK PROM portal in order to optimize its implementation in pediatric clinical practice., Methods: Patients (12-19 years) and parents (of children 0-19 years) from the Emma Children's Hospital were invited to participate. A mixed-method design was used; (1) Focus groups were held and analyzed using thematic analysis in psychology, (2) a questionnaire was sent out and analyzed using descriptive statistics., Results: (1) Eight patients and 17 parents participated. Patients mentioned that KLIK has an attractive layout. However, PROMs were sometimes considered irrelevant and repetitive. Parents valued that KLIK provides insight into their child's functioning, but they were not satisfied with the extent to which PROMs were discussed by clinicians. (2) 31 patients and 130 parents completed the questionnaire. Overall, patients and parents reported a satisfaction score of 7.9/10 and 7.3/10, respectively. 81% of patients and 74% of parents indicated that KLIK is easy to use., Conclusion: Patients and parents are generally satisfied with KLIK, however, points of improvement were mentioned. These are currently being addressed by e.g., upgrading the KLIK website, implementing PROMIS item banks in KLIK to reduce irrelevancy and repetitiveness of PROMs, and implementation strategies to improve the discussion-rate. In this way, implementation of the KLIK PROM portal can be further optimized, with the ultimate goal to improve quality of care., (© 2021. The Author(s).)

Objectives: The aim of the study was to describe the longitudinal development of health-related quality of life (HRQOL) and fatigue in children with chronic intestinal failure (CIF) on home parenteral nutrition (PN) and compare these children to the general population., Methods: Prospective, observational study conducted over 7 years in patients suffering from CIF receiving home PN from 2 tertiary hospitals in the Netherlands. Every 6 months, parents (if child <8 years old) or patients (if child ≥8 years old) completed 2 questionnaires: Pediatric Quality of Life Inventory 4.0 (PedsQL) Generic and Fatigue on the KLIK (kwaliteit van leven in kaart [Dutch Acronym for Quality of Life in Clinical Practice]) Patient Reported Outcome Measures portal, which were compared with the general population. Linear mixed models (LMMs) were constructed to investigate the course of HRQOL over time., Results: Thirty-five patients were included (40% girls). At time of last KLIK contact, patients received HPN for a median of 5.3 years (interquartile range [IQR]: 2.9-9.7). In total, 272 questionnaires were completed. PedsQL generic total score for ages 5 to 7 and 8 to 12 years was significantly lower than the general population (P < 0.01 for both age groups) with effect sizes of 0.73 and 0.71, respectively. PedsQL fatigue total score for ages 5 to 7 years was also significantly lower (P = 0.01; effect size 0.70). LMMs for PedsQL Generic and Fatigue total score 2 to 7 and 8 to 18 years showed no significant coefficient for duration of home PN., Conclusions: Children suffering from CIF receiving home PN ages 5 to 12 years report lower HRQOL scores than the general population. HRQOL and fatigue do not change during long-term treatment with home PN in these children., Competing Interests: S.N. and M.T. have received an investigator-initiated research grant from the Baxter Healthcare Corporation, Deerfield, IL and an ESPGHAN networking grant. M.B. has been a consultant for Shire, Norgine, Tramedico, Allergan, Danone, Novalac, FrieslandCampina, and Sensus, and has received honoraris from Abbott as a speaker. The remaining authors report no conflicts of interest., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.)

Background: Little is known about health-related quality of life (HRQoL) in young children with sickle cell disease living in a European country., Methods: A retrospective cross-sectional evaluation of TNO-AZL Preschool Children Quality of Life questionnaire (TAPQOL, 0-1 year) and Pediatric Quality of Life Inventory (PedsQL, 2-7 years) data was conducted. Study participants included caregivers of children with sickle cell disease aged 0-7 years attending the sickle cell centre at the Erasmus Medical Center or the Amsterdam University Medical Centers between April 2012 and October 2020. Comparisons were made with normative data on HRQoL in the general paediatric population., Results: The study enrolled 136 caregivers of 136 children. In children aged 0-5 years, no significant differences emerged between children with sickle cell disease and the general population. However, in children aged 5-7 years, children with sickle cell disease scored significantly lower on all subscales except for emotional functioning. Multiple regression models showed a negative association between age and HRQoL. No association was found between HRQoL and disease severity or sociodemographic characteristics., Conclusions: This study demonstrates that HRQoL is negatively correlated with age in young children with sickle cell disease with a significantly lower HRQoL in 5- to 7-year-olds when compared to the general population. Our study underlines the importance of measuring HRQoL in young children to identify patients with impaired HRQoL early in life in order to be able to intervene accordingly. Future research should focus on deepening the knowledge of factors influencing HRQoL in children with sickle cell disease., (© 2021 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

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.)

Purpose: Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs., Methods: We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation., Results: Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs., Conclusion: Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability., (© 2020. The Author(s).)

Purpose: Since 2011, the evidence-based KLIK Patient Reported Outcome Measure (PROM) portal has been implemented in clinical practice in > 20 Dutch hospitals. Patients and/or parents complete PROMs on Health Related Quality of Life, symptoms and psychosocial functioning before their outpatient consultation. Answers are converted into an ePROfile and discussed by clinicians during consultation to monitor well-being over time and detect problems early. This study aims to get insight into the KLIK implementation from the clinician's perspective., Methods: As part of the KLIK implementation process, annual meetings were held with multidisciplinary teams to evaluate the use of KLIK. An online questionnaire was sent regarding (1) overall satisfaction, (2) feeling competent to discuss PROMs, (3) use of KLIK during the consultation, (4) influence of KLIK on the consultation, (5) usability of the KLIK PROM portal, (6) satisfaction with PROMs and feedback, and (7) support of the KLIK expert team. Open questions about (dis)advantages were included. Descriptive analyses were used., Results: One hundred and forty-eight clinicians (response-rate 61%) from 14 hospitals in the Netherlands participated. Results show that: (1) clinicians report an overall satisfaction of median = 69/100 (visual analogue scale), (2) 85.8% feel competent discussing the ePROfile, (3) 70.3% (almost) always discuss the ePROfile, (4) 70.3% think that KLIK improves consultation, (5) 71.6% think KLIK is easy to use, (6) 80.4% are satisfied with the feedback of the overall KLIK ePROfile, (7) 71.6% experience sufficient support of the KLIK team., Conclusion: Participating clinicians are generally satisfied with KLIK. Improvements to the KLIK PROM portal are now realized based on the mentioned disadvantages (e.g., shorten PROM completion by use of PROMIS and integrating KLIK with Electronic Health Records)., (© 2020. The Author(s).)

Purpose: The KLIK Patient-Reported Outcome Measure (PROM) portal is an evidence-based intervention implemented in clinical practice in > 25 Dutch hospitals for patients (children and adults) who regularly visit the outpatient clinic. Implementation science frameworks can be used to understand why implementation succeeded or failed, to structure barriers and enablers, and to develop implementation strategies to overcome barriers. This paper aimed to (A) retrospectively describe determinants of successful KLIK PROM implementation using the Consolidated Framework for Implementation Research (CFIR), and (B) identify current barriers and match implementation strategies., Methods: (A) The KLIK implementation process was described retrospectively based on literature and experience, using the 39 CFIR constructs organized in five general domains: intervention characteristics, outer setting, inner setting, characteristics of individuals, and implementation process. (B) The CFIR-Expert Recommendations for Implementing Change (ERIC) Implementation Strategy Matching tool identified current barriers in the KLIK implementation and matched implementation strategies that addressed the identified barriers., Results: (A) The most prominent determinants of successful KLIK PROM implementation lie in the following CFIR domains: intervention characteristics (e.g., easy to use), characteristics of individuals (e.g., motivation), and process of implementation (e.g., support). (B) 13 CFIR constructs were identified as current barriers for implementing the KLIK PROM portal. The highest overall advised ERIC strategy for the specific KLIK barriers was to identify and prepare champions., Conclusion: Using an implementation science framework, e.g., CFIR, is recommended for groups starting to use PROMs in clinical care as it offers a structured approach and provides insight into possible enablers and barriers., (© 2020. The Author(s).)

Purpose: During the COVID-19 pandemic in the Netherlands, governmental regulations resulted in a lockdown for adults as well as children/adolescents. Schools were closed and contact with other people was limited. In this cross-sectional, population-based study, we aimed to investigate the mental/social health of children/adolescents during COVID-19 lockdown., Methods: Two representative samples of Dutch children/adolescents (8-18 years) before COVID-19 (2018, N = 2401) and during lockdown (April 2020, N = 844) were compared on the Patient-Reported Outcomes Measurement Information System (PROMIS) domains: global health, peer relationships, anxiety, depressive symptoms, anger, sleep-related impairment by linear mixed models and calculating relative risks (RR (95% CI)) for the proportion of severe scores. Variables associated with worse mental/social health during COVID-19 were explored through multivariable regression models. The impact of COVID-19 regulations on the daily life of children was qualitatively analyzed., Results: Participants reported worse PROMIS T-scores on all domains during COVID-19 lockdown compared to before (absolute mean difference range 2.1-7.1 (95% CI 1.3-7.9). During lockdown, more children reported severe Anxiety (RR = 1.95 (1.55-2.46) and Sleep-Related Impairment (RR = 1.89 (1.29-2.78) and fewer children reported poor Global Health (RR = 0.36 (0.20-0.65)). Associated factors with worse mental/social health were single-parent family, ≥ three children in the family, negative change in work situation of parents due to COVID-19 regulations, and a relative/friend infected with COVID-19. A large majority (> 90%) reported a negative impact of the COVID-19 regulations on daily life., Conclusion: This study showed that governmental regulations regarding lockdown pose a serious mental/social health threat on children/adolescents that should be brought to the forefront of political decision-making and mental healthcare policy, intervention, and prevention., (© 2021. The Author(s).)

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.)

Aim: To compare Health-Related Quality of Life (HRQOL) of paediatric patients with newly collected HRQOL data of the general Dutch population, explore responses to individual items and investigate variables associated with HRQOL., Methods: Children (8-12y) and adolescents (13-17y) from the general population (N = 966) and from a paediatric population (N = 1209) completed the Pediatric Quality of Life Inventory (PedsQL TM ) online via the KLIK Patient-Reported Outcome Measures portal. PedsQL TM scale scores were compared between groups with independent t tests, by age group and gender. Responses to PedsQL TM items were explored using descriptive analyses. Linear regression analyses were performed to determine which variables were associated with HRQOL., Results: Paediatric patients reported worse HRQOL than the general population on all PedsQL TM scales (p ≤ .001, d = 0.20-1.03), except social functioning, and a high proportion reported problems on PedsQL TM items, for example, 'I have trouble sleeping'. Younger age, female gender and school absence were negatively associated with HRQOL (β = -0.37-0.10, p ≤ .008)., Conclusion: Paediatric patients reported lower HRQOL than the general population, and school absence, female gender and younger age were associated with lower HRQOL. The results underline the importance to structurally monitor paediatric patients' HRQOL in clinical practice to detect problems and offer the right help on time., (©2021 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

Objectives: Health-related quality of life (HRQOL) of children with avoidant restrictive food intake disorder (ARFID) is impaired., Aim: To measure HRQOL and distress of parents of children with ARFID., Methods: Cross-sectional cohort study. Parents of children with ARFID, visiting our multidisciplinary feeding team, completed questionnaires on the online Quality of Life in Clinical Practice portal; the Questionnaire for Adult's Health Related Quality of Life to assess parental HRQOL and the Distress Thermometer for Parents. Reference groups of parents of healthy (HC) and chronically ill children (CIC) were used., Results: Eighty-five mothers and 62 fathers of 89 children with ARFID (58% female, median age 1.9 years) were included (response rate 68%). No differences were found regarding HRQOL in 11 of 12 domains between parents of children with ARFID and HC. Mothers of children with ARFID reported significantly higher HRQOL regarding pain and fathers a significantly lower HRQOL on depressive emotions compared to HC. No differences were found in overall and clinical distress scores between parents of children with ARFID and HC/CIC. Mothers of children with ARFID had significantly higher distress scores regarding cognitive problems compared to HC and parenting problems in children <2 years compared to HC/CIC. Significantly higher distress scores on parenting problems in children <2 years were found in fathers of children with ARFID compared to HC/CIC., Conclusion: Most HRQOL and distress scores of parents of children with ARFID were comparable to reference groups. Since parents of children with ARFID perceive a lack of understanding and support from the environment, professionals should suggest peer support through patient's organizations. Furthermore, it is important to offer professional support since parents indicated that they would like to talk to a professional about their situation., Competing Interests: The authors report no conflicts of interest, (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.)

Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening-questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0-10; ≥4 denoting "clinical distress") and everyday problems (score 0-36). Data were compared to 1,134 control-group-parents of healthy children. Mothers reported significantly less overall distress (2, 1-4 vs. 3, 1-6; p = .049; r = -.07) and total everyday problems (3, 0-6 vs. 4, 1-8; p = .03; r = -.08) compared to control-group-mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0-4 vs. 3.5, 2-5; p = .039; r = -.17). No significant differences were found between the father-groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control-group-parents. No differences in percentages of clinical distress were reported between mothers and control-group-mothers (33 vs. 42%); fathers and control-group-fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one-third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support., (© 2020 The Authors. American Journal of Medical Genetics Part A published by Wiley Periodicals LLC.)

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.)

Objectives: Parents of children with a chronic illness (CI) are at risk for psychosocial problems. The aim of this study was to refine an existing face-to-face intervention into an online psychosocial group intervention for parents by (1) exploring which themes are important, (2) determine what type of intervention parents would like and (3) assess parents' practical preferences., Methods: Parents of children with a CI (0-18 years) were invited to complete an online questionnaire. To acquire more in-depth information, focus groups and telephone interviews were conducted. Descriptive statistics were used., Results: 272 parents (mean age = 43.1 years, 85% female) participated. Three focus groups (15 parents) and seven telephone interviews were conducted. Most important themes were: the CI of the child, family functioning, taking care of yourself, relationships with others and practical support. Parents preferred a group with parents of children in the same age category. At first, parents preferred face-to-face contact. After an explanation and demonstration of an online intervention, parents became more positive about online support, mostly because they could participate from home., Conclusions for Practice: Parents have a need for psychosocial support focusing on different themes. Professionals should explain and demonstrate an online intervention to parents. Based on these results, Op Koers Online for parents was developed. An RCT to assess feasibility and effectiveness of the intervention is currently running.

Background & Aims: Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers., Methods: A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests., Results: No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains., Conclusions: On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN., (Copyright © 2018 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.)

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.)

Introduction: This paper describes the different ways in which information is being fed back to health care providers (HCPs) using the Dutch evidence-based KLIK Patient-Reported Outcome Measures (PROMs) portal (www.hetklikt.nu). KLIK was initially developed for children with a chronic illness and their parents, and recently expanded for use in adult health care. Patients complete online PROMs at home about their health-related quality of life (HRQOL), symptoms and/or psychosocial functioning before an outpatient consultation with their HCP. PROMs are subsequently converted into an individual KLIK electronic (e)PROfile and discussed during the consultation to facilitate systematic attention for HRQOL., Methods for Pro Score Interpretation: KLIK includes a variety of different PROMs. The KLIK ePROfile initially consisted of literal representations of the individual PROM items in the European traffic light colors (red, orange, green) and only one graph. Over the years, the KLIK ePROfile evolved into a broader spectrum of feedback options; (1) literal representation of individual items, (2) summary scores, and (3) graphic representations (4 options)., Developing Recommendations for Acting on Pro Results: The primary goal of KLIK is to longitudinally monitor patient and parent self-reported or proxy-reported health outcomes, which means that the focus of KLIK is not mainly on recommending actions for PRO results. However, there are several aids that help interpretation of the KLIK ePROfile and recommendations are given for actions based on PROM scores. The main aid is the KLIK training, which includes a theoretical and a practical part. In the training, 2 tools-a decision tree and a summary of information about the KLIK ePROfile-are given to the HCPs to assist them in using KLIK., Discussion: Customization of a PROM portal is needed for each different patient group and clinical setting. Because the KLIK website is flexible, every PROM (with good psychometric qualities and permission of the publisher) can be built in. However, implementing and feeding back PROMs in pediatric health care encompasses different challenges, because different versions of the same PROM are needed for children of different ages, as well as proxy and self-report versions.

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: To provide targeted support to parents of children with DS, knowledge of their distress and everyday problems is crucial. For this purpose, psychosocial screening instruments can be a valuable addition to routine clinical practice., Aims: To determine differences on a psychosocial screener concerning distress and everyday problems in parents of young adolescents (YAs) with DS versus control parents and in mothers of YAs with DS versus fathers., Methods and Procedures: We compared outcomes of the Distress Thermometer for Parents in 76 mothers and 44 fathers of 11-13-year-olds with DS versus 64 mothers and 52 fathers of age-matched children without DS (comparing mothers and fathers separately). Additionally, we compared mothers and fathers within 34 parent couples of YAs with DS., Outcomes and Results: Clinical distress was not more frequent than in control parents. Mothers further did not report more everyday problems and only differed from their controls on one problem domain and some problem items. Fathers, however, reported more problems than their controls across most domains and wished to talk to a professional about their situation more frequently. Outcomes in mothers and fathers within parent couples did not differ significantly., Conclusions and Implications: This is one of few studies to report on the use of psychosocial screening instruments in parents of children with DS. Our results suggested that attention for fathers of YAs with DS is required. Psychosocial screening instruments that inquire about specific problems and the wish for referral can play an important role in achieving this., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

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.