Health status and public health needs in a Togolese child health care centre modelled after the Dutch system.

BACKGROUND: The charity foundation Association Soutien Enfants Togo started a child health care (CHC) centre in Togo that was modelled after the Dutch high-quality CHC system to improve child health. AIM: To describe health care data of children who visited the centre. SUBJECTS AND METHODS: Data were routinely collected between October 2010-July 2017. Outcomes were completed vaccinations, growth, development, lifestyle, physical examination, and laboratory testing results. RESULTS: In total, 8,809 children aged 0-24 years were available. Half (47.5%) of children aged 0-4 years did not receive all eligible free vaccinations from the government. The proportions of stunted children (all) or with a developmental delay (0-4 years) were 10.1% and 9.5%, respectively. In total, 40-50% of all children did not wash their hands with soap after toilet or before eating, or did not use clean drinking water. Furthermore, 5.1-6.6% had insufficient vision, high eye pressure or hearing loss. Sickle cell disease was detected in 5.3%. CONCLUSION: A large group of children in need of prevention and early treatment were detected, informed and treated by the centre. Further research is needed to confirm if this strategy can improve children's health in Sub-Saharan Africa. Our data are available for further research.

Development and evaluation study of FLY-Kids: a new lifestyle screening tool for young children.

Evaluating, discussing, and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. We aimed to develop and evaluate a new lifestyle screening tool for children aged 1-3 years. The lifestyle screening tool "FLY-Kids" was developed using data from lifestyle behaviour patterns of Dutch toddlers, age-specific lifestyle recommendations, target group analyses, and a Delphi process. Through 10 items, FLY-Kids generates a dashboard with an overview of the child's lifestyle that can be used as conversation aid. FLY-Kids was completed by parents of children aged 1-3 years attending a regular youth healthcare appointment. Youth healthcare professionals (YHCP) then used the FLY-Kids dashboard to discuss lifestyle with the parents and provided tailored advice. Parents as well as YHCP evaluated the tool after use. Descriptive and correlation statistics were used to determine the usability, feasibility, and preliminary effect of FLY-Kids. Parents (N = 201) scored an average of 3.2 (out of 9, SD 1.6) unfavourable lifestyle behaviours in their children, while 3.0% complied with all recommendations. Most unfavourable behaviours were reported in unhealthy food intake and electronic screen time behaviour. Parents and YHCP regarded FLY-Kids as usable and feasible. The number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment (r = 0.47, p < 0.001).     Conclusion: FLY-Kids can be used to identify unhealthy lifestyle behaviour in young children and guide the conversation about lifestyle in preventive healthcare settings. End-users rated FLY-Kids as helpful and user-friendly. What is Known: • A healthy lifestyle is important for optimal growth, development and overall health of young children (1-3 years). • Evaluating, discussing and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. What is New: • The new lifestyle screening tool FLY-Kids generates a dashboard with an overview of young children's lifestyle that can be used as conversation aid between parents and youth healthcare professionals. • As parents and youth healthcare professionals rated FLY-Kids as helpful and user-friendly, and the number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment, FLY-Kids can be considered guiding the lifestyle discussion in preventive healthcare settings.

The creation of the Global Scales for Early Development (GSED) for children aged 0-3 years: combining subject matter expert judgements with big data.

INTRODUCTION: With the ratification of the Sustainable Development Goals, there is an increased emphasis on early childhood development (ECD) and well-being. The WHO led Global Scales for Early Development (GSED) project aims to provide population and programmatic level measures of ECD for 0-3 years that are valid, reliable and have psychometrically stable performance across geographical, cultural and language contexts. This paper reports on the creation of two measures: (1) the GSED Short Form (GSED-SF)-a caregiver reported measure for population-evaluation-self-administered with no training required and (2) the GSED Long Form (GSED-LF)-a directly administered/observed measure for programmatic evaluation-administered by a trained professional. METHODS: We selected 807 psychometrically best-performing items using a Rasch measurement model from an ECD measurement databank which comprised 66 075 children assessed on 2211 items from 18 ECD measures in 32 countries. From 766 of these items, in-depth subject matter expert judgements were gathered to inform final item selection. Specifically collected were data on (1) conceptual matches between pairs of items originating from different measures, (2) developmental domain(s) measured by each item and (3) perceptions of feasibility of administration of each item in diverse contexts. Prototypes were finalised through a combination of psychometric performance evaluation and expert consensus to optimally identify items. RESULTS: We created the GSED-SF (139 items) and GSED-LF (157 items) for tablet-based and paper-based assessments, with an optimal set of items that fit the Rasch model, met subject matter expert criteria, avoided conceptual overlap, covered multiple domains of child development and were feasible to implement across diverse settings. CONCLUSIONS: State-of-the-art quantitative and qualitative procedures were used to select of theoretically relevant and globally feasible items representing child development for children aged 0-3 years. GSED-SF and GSED-LF will be piloted and validated in children across diverse cultural, demographic, social and language contexts for global use.

Protocol for validation of the Global Scales for Early Development (GSED) for children under 3 years of age in seven countries.

INTRODUCTION: Children's early development is affected by caregiving experiences, with lifelong health and well-being implications. Governments and civil societies need population-based measures to monitor children's early development and ensure that children receive the care needed to thrive. To this end, the WHO developed the Global Scales for Early Development (GSED) to measure children's early development up to 3 years of age. The GSED includes three measures for population and programmatic level measurement: (1) short form (SF) (caregiver report), (2) long form (LF) (direct administration) and (3) psychosocial form (PF) (caregiver report). The primary aim of this protocol is to validate the GSED SF and LF. Secondary aims are to create preliminary reference scores for the GSED SF and LF, validate an adaptive testing algorithm and assess the feasibility and preliminary validity of the GSED PF. METHODS AND ANALYSIS: We will conduct the validation in seven countries (Bangladesh, Brazil, Côte d'Ivoire, Pakistan, The Netherlands, People's Republic of China, United Republic of Tanzania), varying in geography, language, culture and income through a 1-year prospective design, combining cross-sectional and longitudinal methods with 1248 children per site, stratified by age and sex. The GSED generates an innovative common metric (Developmental Score: D-score) using the Rasch model and a Development for Age Z-score (DAZ). We will evaluate six psychometric properties of the GSED SF and LF: concurrent validity, predictive validity at 6 months, convergent and discriminant validity, and test-retest and inter-rater reliability. We will evaluate measurement invariance by comparing differential item functioning and differential test functioning across sites. ETHICS AND DISSEMINATION: This study has received ethical approval from the WHO (protocol GSED validation 004583 20.04.2020) and approval in each site. Study results will be disseminated through webinars and publications from WHO, international organisations, academic journals and conference proceedings. REGISTRATION DETAILS: Open Science Framework https://osf.io/ on 19 November 2021 (DOI 10.17605/OSF.IO/KX5T7; identifier: osf-registrations-kx5t7-v1).

The Preventive Child and Youth Healthcare Service in the Netherlands: The State of the Art and Challenges Ahead.

The Netherlands has a unique system for promoting child and youth health, known as the preventive Child and Youth Healthcare service (CYH). The CYH makes an important contribution to the development and health of children and young people by offering (anticipatory) information, immunisation, and screening, identifying care needs and providing preventive support to children and their families from birth up to the age of 18 years. The CYH is offered free of charge and offers basic preventive care to all children and special preventive care to children who grow up in disadvantaged situations, such as children growing up in poverty or in a family where one of the members has a chronic health condition. Basic care is supported by 35 evidence-based guidelines and validated screening tools. Special care is supported by effective interventions. The impact of the CYH is high. It is estimated that every EUR 1 spent on the CYH provides EUR 11 back. Although the Dutch CYH is a solid public health system with a reach of up to 95% among young children, the access to this service could be further improved by paying more attention to health literacy, making special care available to all children in need and improving transmural and integrated care coordination. In addition, the generation of nationwide data could help to demonstrate the impact of the CYH and will direct and prioritise the necessary care. By continuously developing care on the basis of new (scientific) insights and (societal) issues, the CYH will continue to offer all children in the Netherlands the best preventive healthcare.

Women-centered care: Implementation of CenteringPregnancy® in The Netherlands.

INTRODUCTION: In response to a relatively high perinatal mortality rate in The Netherlands, the Dutch Health Ministry recommended changes to maternity care, opening a pathway toward more integrated woman-centered services. Because of its potential to positively influence risk factors for adverse pregnancy outcomes, CenteringPregnancy (CP) group prenatal care was implemented. METHODS: We performed a retrospective cohort study (n = 2318) and survey on women's experiences (n = 222) in eight primary care midwifery practices to investigate outcome differences between CP and traditional individual prenatal care. Data from the period 2011-2013 were analyzed. RESULTS: Primiparous and multiparous CP women attended more prenatal care visits compared with women who received individual care (adjusted odds ratio [aOR] 1.23 [95% confidence interval [CI] 1.18-1.29] and 1.29 [1.21-1.36]). Fewer primiparous CP women used pain relief during labor (0.56 [0.43-0.73]), and they initiated breastfeeding more often (1.74 [1.15-2.62]). Women participating in CP were more likely to feel that their wishes with respect to medication use (69.1% vs 54.4%, P = 0.039), physical activities (72.8% vs 52.5%, P = 0.008), and relaxation exercises (67.9% vs 35.6%, P ≤ 0.001) were listened to by care providers. They also felt more supported to actively participate in their care (89.6% vs 68.5%, P = 0.001) and felt more able to voice opinions about care (92.7% vs 73.9%, P = 0.002). CONCLUSIONS: The CP model is a good approach aligning with Dutch policy calling for women-centered care and responding to the needs of pregnant women. This study supports CP scale-up in The Netherlands and adds to the pool of international knowledge about CP implementation.

Development and validation of the Dutch version of the London Handicap Scale.

BACKGROUND: The London Handicap Scale (LHS) was found to be a valid and reliable scale for measuring participation restrictions in adults. OBJECTIVE: This paper describes the development and assesses the construct-related validity of a Dutch version of the London Handicap Scale (DLHS). METHODS: The DLHS was tested in 798 adults (mean age: 50.7 years, SD=14.5, range 16 to 85) and validated with the 'Impact on Participation and Autonomy' (IPA) questionnaire, the Dutch version of the EQ-5D and questions concerning comorbidity and use of medical devices. The study population consisted of patients with rheumatoid arthritis, chronic obstructive pulmonary disease (COPD), epilepsy, laryngectomy and multiple sclerosis. RESULTS: Feasibility was satisfactory. Large correlations (ρ > 0.6) for the DLHS sum score were found with the IPA subscales 'autonomy outdoors', 'perceiving problems', 'family role', autonomy indoors', 'work and education' and with the EQ-5D. The DLHS sum score differs significantly between subgroups based on the number of chronic diseases, number of medical devices and self-reported burden of disease or handicap (p< 0.001). CONCLUSIONS: Based on this evaluation the questionnaire seems feasible and valid for assessing differences in level of participation between subgroups of chronically ill or disabled persons in the Netherlands.

The attitudes and intention to participate in hemoglobinopathy carrier screening in The Netherlands among individuals from Turkish, Moroccan, and Surinamese descent.

OBJECTIVE: To explore factors that influence intention to participate in hemoglobinopathy (HbP) carrier screening under Dutch subjects at risk, since HbP became more common in The Netherlands. METHOD: Structured interviews with 301 subjects from Turkish, Moroccan, or Surinamese ethnicity. RESULTS: Half of the participants were familiar with HbP, 27% with carrier screening. Only 55% correctly answered basic knowledge items. After balanced information, 83% percent of subjects express intention to participate in HbP carrier screening. Intention to participate was correlated with (1) anticipated negative feelings, (2) valuing a physician's advice, and (3) beliefs on significance of carrier screening. Risk perception was a significant determinant, while respondents were unaware of HbP as endemic in their country of birth. Respondents preferred screening before pregnancy and at cost < 50€. CONCLUSION: These findings show the importance of informing those at risk by tailored health education. We propose easy access at no costs for those willing to participate in HbP carrier screening.

Problem behavior of individuals with Down syndrome in a nationwide cohort assessed in late adolescence.

OBJECTIVE: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability. STUDY DESIGN: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 years were collected using a written parental questionnaire. Problem behavior was measured using the Child Behavior Checklist and compared with normative data. The degree of intellectual disability was determined using the Dutch Social competence rating scale. RESULTS: The response rate was 62.8% (322/513), and the mean age 18.3 years (SD ± 0.8). The total score for problem behavior was higher in adolescents with Down syndrome than in adolescents without Down syndrome (26.8 vs 16.5; P < .001). Overall, 51% of adolescents with Down syndrome had problem scores in the clinical or borderline range on 1 or more Child Behavior Checklist subscales; this is more than twice as high as adolescents without Down syndrome. Adolescents with Down syndrome had more internalizing problems than their counterparts without Down syndrome (14% and 9%, respectively, in the clinical range); the percentages for externalizing problems were almost equal (7% and 9%, respectively, in the clinical range). The highest problem scores in adolescents with Down syndrome were observed on the social problems and thought problems subscales (large to very large standardized differences). Male sex and/or more severe mental disabilities were associated with more behavioral problems. CONCLUSIONS: Serious problem behavior is more prevalent in adolescents with Down syndrome. This demonstrates the need for a focus on general behavior improvement and on the detection and treatment of specific psychopathology in individuals with Down syndrome.

Ethnicity, educational level and attitudes contribute to parental intentions about genetic testing for child obesity.

The objective of this paper is to assess parental beliefs and intentions about genetic testing for their children in a multi-ethnic population with the aim of acquiring information to guide interventions for obesity prevention and management. A cross-sectional survey was conducted in parents of native Dutch children and children from a large minority population (Turks) selected from Youth Health Care registries. The age range of the children was 5-11 years. Parents with lower levels of education and parents of non-native children were more convinced that overweight has a genetic cause and their intentions to test the genetic predisposition of their child to overweight were firmer. A firmer intention to test the child was associated with the parents' perceptions of their child's susceptibility to being overweight, a positive attitude towards genetic testing, and anticipated regret at not having the child tested while at risk for overweight. Interaction effects were found in ethnic and socio-economic groups. Ethnicity and educational level play a role in parental beliefs about child overweight and genetic testing. Education programmes about obesity risk, genetic testing and the importance of behaviour change should be tailored to the cultural and behavioural factors relevant to ethnic and socio-economic target groups.

Ethnic differences and parental beliefs are important for overweight prevention and management in children: a cross-sectional study in the Netherlands.

BACKGROUND: The prevalence of obesity and overweight is highest among ethnic minority groups in Western countries. The objective of this study is to examine the contribution of ethnicity and beliefs of parents about overweight preventive behaviours to their child's outdoor play and snack intake, and to the parents' intention to monitor these behaviours. METHODS: A cross-sectional survey was conducted among parents of native Dutch children and children from a large minority population (Turks) at primary schools, sampled from Youth Health Care registers. RESULTS: Native Dutch parents observed more outdoor play and lower snack intake in their child and had stronger intentions to monitor these behaviours than parents of Turkish descent. In the multivariate analyses, the parents' attitude and social norm were the main contributing factors to the parental intention to monitor the child's outdoor play and snack intake. Parental perceived behavioural control contributed to the child's outdoor play and, in parents who perceived their child to be overweight, to snacking behaviour. The associations between parents' behavioural cognitions and overweight related preventive behaviours were not modified by ethnicity, except for perceived social norm. The relationship between social norm and intention to monitor outdoor play was stronger in Dutch parents than in Turkish parents. CONCLUSIONS: As the overweight related preventive behaviours of both children and parents did differ between the native and ethnic minority populations of this study, it is advised that interventions pay attention to cultural aspects of the targeted population. Further research is recommended into parental behavioural cognitions regarding overweight prevention and management for different ethnicities.

The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer.

BACKGROUND: This study investigates the effect of using patient reported outcomes (PROs) about health-related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation. PROCEDURE: Children (N = 193) with cancer participated in a sequential cohort intervention study, with a control (no PRO was used) and intervention group (a PRO was used). For each child three consecutive consultations with the paediatric oncologist were audio recorded in order to assess the discussed psychosocial topics. One third of the audio recordings were qualitatively analysed. RESULTS: The type of the discussed psychosocial topics in the control and intervention group did not differ from each other. However, the discussion of psychosocial topics increased in the intervention group compared to the control group. In both groups, topics within the social domain occurred most frequently and topics regarding the emotional domain had the lowest incidence. CONCLUSIONS: PROs do not change the psychosocial content of communication. Paediatric oncologists already address psychosocial issues during the consultation, regardless of the use of a PRO. However, with a PRO available they address these issues more systematically and more often.

Accuracy of self-reported family history is strongly influenced by the accuracy of self-reported personal health status of relatives.

OBJECTIVE: We investigated the accuracy of self-reported family history for diabetes, hypertension, and overweight against two reference standards: family history based on physician-assessed health status of relatives and on self-reported personal health status of relatives. STUDY DESIGN AND SETTING: Subjects were participants from the Erasmus Rucphen Family study, an extended family study among descendants of 20 couples who lived between 1850 and 1900 in a southwest region of the Netherlands and their relatives (n=1,713). Sensitivity and specificity of self-reported family history were calculated. RESULTS: Sensitivity of self-reported family history was 89.2% for diabetes, 92.2% for hypertension, and 78.4% for overweight when family history based on relatives' self-reported personal health status was used as reference and 70.8% for diabetes, 67.4% for hypertension, and 77.3% for overweight when physician-assessed health status of relatives was used. Sensitivity and specificity of self-reported personal health status were 76.8% and 98.8% for diabetes, 38.9% and 98.0% for hypertension, and 80.9% and 75.7% for overweight, respectively. CONCLUSION: The accuracy of self-reported family history of diabetes and hypertension is strongly influenced by the accuracy of self-reported personal health status of relatives. Raising awareness of personal health status is crucial to ensure the utility of family history for the assessment of risk and disease prevention.

Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective?

BACKGROUND: The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. PROCEDURE: Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). RESULTS: The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). CONCLUSIONS: We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Can patient-reported outcome measures identify cancer patients' most bothersome issues?

PURPOSE: Patient-reported outcome (PRO) questionnaires are being investigated for their ability to aid in individual patient management. We evaluated whether PROs can identify patients' most bothersome quality-of-life issues and compared approaches for interpreting PRO scores. METHODS: This secondary data analysis included 130 patients with cancer (mean age, 57 years; 71% female) receiving outpatient palliative chemotherapy. Patients completed a PRO (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire [QLQ-C30]) at up to three consecutive visits and reported one or two of their most bothersome function and symptom issues from categories based on QLQ-C30 domains. We compared two approaches for interpreting PRO scores and identified which way better identified patients' most bothersome issues: worst scores in absolute terms or worst change from the previous time point. RESULTS: For patients reporting one bothersome issue, absolute scores identified it correctly 91% of the time for both function and symptoms versus change scores' accuracy of 40% for function and 26% for symptoms. For patients reporting two bothersome issues, absolute scores identified at least one correctly 98% of the time for both function and symptoms versus change scores' 63% for function and 62% for symptoms. Absolute scores identified both issues correctly 42% of the time for function and 66% of the time for symptoms versus change scores' performance of 23% for both function and symptoms. CONCLUSION: Absolute scores identify patients' most bothersome quality-of-life issues better than change scores. These results support the use of PROs in clinical practice and suggest that clinicians may want to focus on the worst absolute scores when examining PRO score reports.

Reliability and validity of the Spanish version of the TAPQOL: a health-related quality of life (HRQOL) instrument for 1- to 5-year-old children.

OBJECTIVES: To evaluate the reliability, and construct validity of the Spanish version of the TNO-AZL preschool children quality of life (TAPQOL). METHODS: A consecutive sample of children (3 months to 5 years old) was recruited from primary care centers and two teaching hospitals in Spain. The TAPQOL and a set of questions related to their child's health status were administered to parents. Clinical diagnoses were collected from clinical records. Principal component analysis (PCA) with varimax rotation was used to analyze the instrument's structure. Effect size (ES) and analysis of variance (ANOVA) were used to analyze differences between subgroups known to be in poor health compared to the healthy subgroup. RESULTS: A total of 228 children participated in the study (response rate=95%). Ten of the 12 scales showed more than 30% ceiling effect. All dimensions except one had Cronbach's alpha coefficients greater than 0.7. PCA explained 75% of the variance. Healthy children in general had better scores than the other subgroups. Children at risk of poor health outcomes and those with respiratory problems scored lower in several scales than the healthy subgroup. CONCLUSIONS: Although the Spanish TAPQOL shows a non-negligible ceiling effect, it seems to be a reliable and valid instrument for Spanish infants and toddlers, and with similar psychometric characteristics to the original version. Future studies should try to improve questionnaire's structure and assess its sensitivity to change.

Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice.

OBJECTIVE: The use of patient reported outcomes (PRO) in routine clinical practice is becoming increasingly common, but there is limited knowledge about the development and implementation of PRO. The objective of the current paper is to provide a thorough description of the development and implementation of a PRO on health related quality of life (HRQOL)--the QLIC-ON PROfile--in clinical paediatric oncology practice. METHODS: The development of the QLIC-ON PROfile is explained by elucidating important choices: the HRQOL instrument, the professional that uses the QLIC-ON PROfile, the optimal form of HRQOL feedback and whether or not a clinically important difference is reported. The description of the implementation of the QLIC-ON PROfile focuses on the education and commitment of the professional that uses the QLIC-ON PROfile. Study design and outcome measures are also elaborated on. RESULTS: Important considerations regarding the development and implementation of PRO interventions are reported. These considerations have also resulted in educational material. CONCLUSION: Our study adds to current knowledge of PRO research. This paper can be used as a practical guide for researchers and other professionals, who are interested in setting up PRO interventions in any clinical setting.

Translational research in genomics of Alzheimer's disease: a review of current practice and future perspectives.

Alzheimer's disease (AD) is the most prevalent form of dementia and the number of cases is expected to increase exponentially worldwide. Three highly penetrant genes (AbetaPP, PSEN1, and PSEN2) explain only a small number of AD cases with a Mendelian transmission pattern. Many genes have been analyzed for association with non-Mendelian AD, but the only consistently replicated finding is APOE. At present, possibilities for prevention, early detection, and treatment of the disease are limited. Predictive and diagnostic genetic testing is available only in Mendelian forms of AD. Currently, APOE genotyping is not considered clinically useful for screening, presymptomatic testing, or clinical diagnosis of non-Mendelian AD. However, clinical management of the disease is expected to benefit from the rapid pace of discoveries in the genomics of AD. Following a recently developed framework for the continuum of translation research that is needed to move genetic discoveries to health applications, this paper reviews recent genetic discoveries as well as translational research on genomic applications in the prevention, early detection, and treatment of AD. The four phases of translation research include: 1) translation of basic genomics research into a potential health care application; 2) evaluation of the application for the development of evidence-based guidelines; 3) evaluation of the implementation and use of the application in health care practice; and 4) evaluation of the achieved population health impact. Most research on genome-based applications in AD is still in the first phase of the translational research framework, which means that further research is still needed before their implementation can be considered.

Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands.

BACKGROUND: Knowledge about psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands is limited and Dutch reference data are lacking. Aim of the current study is to collect Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity. METHODS: In this study the PedsQL was administered to Dutch children aged 5 to 18 years. A socio-demographic questionnaire was completed as well. The sample consisted of three age groups: 5-7 years (parent proxy report), 8-12 years and 13-18 years (child self report). Analysis was performed with SPSS 16.0.2. A reliability analysis was done using Cronbach's alpha coefficient. Socio-demographic within-group differences were assessed by means of an ANOVA with post hoc Bonferroni correction and t-tests. Subsequently, construct validity was determined by t-tests and effect sizes. RESULTS: For 496 children PedsQL reference data were collected. PedsQL total scores were 84.18 (group 5-7), 82.11 (group 8-12) and 82.24 (group 13-18). Internal consistency coefficients ranged from .53 to .85. Socio-demographic within-group differences demonstrated that, in group 8-12, children of parents born in the Netherlands had significantly lower scores on several PedsQL subscales, compared to children of parents born in another country. With respect to construct validity, healthy children of group 5-7 and 13-18 scored significantly higher than children with a chronic health condition on all subscales, except for emotional functioning. In group 5-7, the PedsQL total score for healthy children was 85.31, whereas the same age group with a chronic health condition scored 78.80. Effect sizes in this group varied from 0.58 to 0.88. With respect to group 13-18, healthy children obtained a PedsQL total score of 83.14 and children suffering from a chronic health condition 77.09. Effect sizes in this group varied from 0.45 to 0.67. No significant differences were found in group 8-12 regarding health. CONCLUSION: The Dutch version of the PedsQL has adequate psychometric properties and can be used as a health related quality of life instrument in paediatric research in the Netherlands.

Family history of diabetes: exploring perceptions of people at risk in the Netherlands.

INTRODUCTION: The aim of this study was to explore the perceptions of causes, risk, and control with regard to diabetes and the role of family history among people at increased risk for type 2 diabetes. METHODS: Semistructured interviews were conducted among people aged 57 to 72 years with (n = 9) and without (n = 12) a family history of diabetes. RESULTS: Participants mentioned different causes for diabetes; these were often a combination of genetic and behavioral factors. Some participants with a family history expressed incoherent causal beliefs; their general ideas about the causes of diabetes did not explain why their relatives were affected. The role of genetics as a cause for diabetes was more pronounced when people perceived diabetes as "running in the family," and this finding did not necessarily relate to a high number of affected relatives. Although people with a family history were aware of the diabetes in their family, they did not always associate their family history with increased risk, nor did they worry about getting diabetes. The absence of diabetes in the family was often used as a reason to perceive a low risk. Participants who primarily perceived genetic predisposition as a cause felt less able to prevent getting diabetes. CONCLUSION: Future diabetes prevention strategies would benefit from giving more attention to individual perceptions, especially in the context of family history, explaining the multifactorial character of diabetes, and highlighting effective ways to reduce the risk.