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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Internet-based self-management offers an opportunity to achieve better asthma control in adolescents.

Background: Internet and short message service are emerging tools for chronic disease management in adolescents, but few data exist on the barriers to and benefits of internet-based asthma self-management. Our objective was to reveal the barriers and benefits perceived by adolescents with well-controlled and poorly controlled asthma to current and internet-based asthma management.

Methods: Ninety-seven adolescents with mild-to-moderate persistent asthma monitored their asthma control on a designated Web site.

Cost-effectiveness of pharmacogenomics in clinical practice: a case study of thiopurine methyltransferase genotyping in acute lymphoblastic leukemia in Europe.

Only a few studies have addressed the cost-effectiveness of pharmacogenetics interventions in healthcare. Lack of health economics data on aspects of pharmacogenetics is perceived as one of the barriers hindering its implementation for improving drug safety. Thus, a recent Institute for Prospective Technological Studies (IPTS) study, entitled 'Pharmacogenetics and pharmacogenomics: state-of-the-art and potential socio-economic impact in the EU' included an explorative cost-effectiveness review for a pharmacogenetic treatment strategy compared with traditional medical practice.

Level of agreement between patient self-report and observer ratings of health-related quality of life communication in oncology.

Objective: To determine the level of agreement between patients and observers regarding the frequency with which health-related quality of life topics are discussed during outpatient clinical oncology visits.

Methods: The sample (n=50) consisted of a consecutive series of cancer patients undergoing chemotherapy. Both the patients and observers used a checklist to report which HRQL topics had been discussed during the consultation.

Modelling and estimation of valuations for the Dutch London Handicap Scale.

This paper presents a study to estimate a preference-based participation index from the Dutch London Handicap Scale (LHS) classification system that can be applied to past or future Dutch LHS data sets. A subset of 60 states were valued by a representative sample of 285 respondents of the Dutch general adult population. Different models were estimated for predicting health state valuations for all 46,656 states defined by the LHS.

Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial.

Context: There has been increasing interest in the use of health-related quality-of-life (HRQL) assessments in daily clinical practice, yet few empirical studies have been conducted to evaluate the usefulness of such assessments.

Objective: To evaluate the efficacy of standardized HRQL assessments in facilitating patient-physician communication and increasing physicians' awareness of their patients' HRQL-related problems.

Design: Prospective, randomized crossover trial.