http://repub.eur.nl/res/aut/576/ List of Publications en http://repub.eur.nl/static-eur/img/logo.png http://repub.eur.nl http://repub.eur.nl/res/pub/31380/ 2011-07-27T00:00:00Z Purpose: This study compares HRQOL among subgroups of infants with asthma-like symptoms to a subgroup without such symptoms and examines independent associations between asthma-like symptoms during the first year of life and HRQOL at age 12 months. Methods: Our study sample included 5,000 infants participating in the Generation R study. Their parents completed structured questionnaires to obtain information on asthma-like symptoms, HRQOL, infants', and maternal characteristics. Asthma-like symptoms were defined according to the number of positive answers to 12 items on lower respiratory symptoms. HRQOL was measured using the ITQOL. Higher scores indicated better HRQOL. Results: Infants with asthma-like symptoms had significantly lower HRQOL scores for all ITQOL scales. Among the subgroup with severe symptoms (4% of the infants), relevant deficits in HRQOL were observed for most ITQOL scales, particularly for General Health, Bodily Pain, and Family Activities (effect sizes ≥ 0.8). In multivariate linear models, asthma-like symptoms were independently associated with 6 ITQOL scales. The population attributable risks were especially high for Family Activities, General Health, Parental Emotional, and Parental Time. Conclusions: Asthma-like symptoms during the first year of life are associated with impaired quality of life at age 12 months. At population level, asthma-like symptoms were associated with lower HRQOL, regardless of symptom severity. http://repub.eur.nl/res/pub/34060/ 2011-06-01T00:00:00Z Objective: To test the responsiveness of the Infant/Toddler Quality of Life Questionnaire (ITQOL) to five health conditions. In addition, to evaluate the impact of the child's age and gender on the ITQOL domain scores. Methods: Observational study of 494 Dutch preschool-aged children with five clinical conditions and 410 healthy preschool children randomly sampled from the general population. The clinical conditions included neurofibromatosis type 1, wheezing illness, bronchiolitis, functional abdominal complaints, and burns. Health-related quality of life (HRQoL) was assessed by a mailed parent-completed ITQOL. Mean ITQOL scale scores for all conditions were compared with scores obtained from the reference sample. The effect of patient's age and gender on ITQOL scores was assessed using multi-variable regression analysis. Results: In all health conditions, substantially lower scores were found for several ITQOL scales. The conditions had a variable effect on the type of ITQOL domains and a different magnitude of effect. Scores for 'physical functioning', 'bodily pain', and 'general health perceptions' showed the greatest range. Parental impact scales were equally affected by all conditions. In addition to disease type, the child's age and gender had an impact on HRQoL. Conclusions: The five health conditions (each with a distinct clinical profile) affected the ITQOL scales differently. These results indicate that the ITQOL is sensitive to specific characteristics and symptom expression of the childhood health conditions investigated. This insight into the sensitivity of the ITQOL to health conditions with different symptom expression may help in the interpretation of HRQoL results in future applications. http://repub.eur.nl/res/pub/21749/ 2010-10-01T00:00:00Z Aim: The aim of this paper is to describe the Generation R study as a template that enables candidate gene study and genome-wide association study regarding health-related quality of life (HRQOL) of mothers and their young children. Methods: Generation R is a population-based prospective cohort study from fetal life onwards in Rotterdam, The Netherlands. Children were born in 2002-2006. Blood from mothers and placenta cord blood were sampled. Mothers' HRQOL was measured 5 times during pregnancy and after birth using SF-12 and EQ-5D. Children's HRQOL was measured 5 times between age 1 and 5/6 years using Infant-Toddler Quality Of Life questionnaire (ITQOL), Health Status Classification System PreSchool (HSCS-PS) and Child Health Questionnaire Parent Form 28 items (CHQ-PF28), respectively. Results: DNA is available for 8,055 mothers and 5,908 children. Genotyping of various candidate genes and a genome-wide association (GWA) scan (Illumina 610K) of child DNA were done. A template for gene-HRQOL analyses is provided. We start with candidate gene study on HRQOL of mothers and children. Gene-environment interaction and interaction with medical indicators of health status will be explored. Next, GWA study on HRQOL will be performed. Conclusions: Gaining insight into the determinants of HRQOL is essential to assisting efforts in health policy and clinical application to improve well-being and health. In the future, it might be possible to complement HRQOL assessments by examinations of genetic markers. Strengths and weaknesses of the Generation R study are discussed. http://repub.eur.nl/res/pub/28206/ 2010-04-01T00:00:00Z Purpose The aim of this study is to assess the influence of functional abdominal complaints (FAC) on health-related quality of life in a group of Dutch pre-school children. Methods Parents of children aged up to 6.0 visiting the outpatient pediatric department, Erasmus MC-Sophia, Rotterdam, The Netherlands in the period January 2005-December 2006 for functional abdominal complaints during at least 3 months were asked to complete the Infant/Toddler Quality of life Questionnaire (ITQOL), and questions of the abdominal pain index for use by parents to report pain symptoms in pre-school children. ITQOL scale scores of children with FAC were compared against with Dutch reference values. The abdominal pain index was tested for internal consistency and test-retest reliability. Correlations between ITQOL scale scores and abdominal pain index were assessed by Spearman's rank test. Results Results are based on 81 questionnaires completed by parents of children with FAC (response rate 61%). Children had a median age of 46 months (interquartile range 27-59), 48% girls. A significant impact was observed on most aspects of quality of life, particularly for physical functioning, general development, bodily pain, temperament and moods, general health perceptions and parental emotional impact. Parents of children with functional constipation tended to report lower scores than those of children with other FAC. The abdominal pain index appeared to be valid and was significantly correlated with ITQOL scales bodily pain and general health perceptions. Conclusions A substantial lower health-related quality of life is reported in pre-school children with functional abdominal complaints, with effects on physical, emotional and parental domains. The 5-question severity index of abdominal pain appeared a valid tool and may be helpful to quickly assess the severity of abdominal pain in clinical practice. http://repub.eur.nl/res/pub/35275/ 2007-08-01T00:00:00Z Objective: To assess the health-related quality of life of 34 Dutch children 12 to 72 months of age with neurofibromatosis type 1 (NF1) using the Infant/Toddler Quality of Life Questionnaire (ITQOL) and to investigate the potential impact of clinical factors on parental reports of health-related quality of life. Study design: A parent-completed form including the ITQOL, NF1-specific questions, and sociodemographic questions was sent. ITQOL scale scores were compared for the study population against Dutch reference values. The influence of general and clinical characteristics on ITQOL scale scores was evaluated with multivariate analysis. Results: A significant impact was observed on most aspects of quality of life, particularly for growth and development, general health perceptions and parental impact. The lowest scores were observed in children with complications because of NF1. ITQOL scale scores were affected by parental educational level, familial NF1, and parental reports of complications of NF1 and perceived disease severity. Conclusions: Important aspects of health-related quality of life were observed to be negatively affected in children with NF1, as measured by the ITQOL. Family-related and disease-related variables appeared to influence the quality of life in children with NF1. http://repub.eur.nl/res/pub/36477/ 2007-05-01T00:00:00Z Aims: In this study we evaluated indicators of the feasibility, reliability, and validity of the Child Health Questionnaire-Child Form (CHQ-CF). We compared the results in a subgroup of adolescents who completed the standard paper version of the CHQ-CF with the results in another subgroup of adolescents who completed an internet version, i.e., an online, web-based CHQ-CF questionnaire. Methods: Under supervision at school, 1,071 adolescents were randomized to complete the CHQ-CF and items on chronic conditions by a paper questionnaire or by an internet administered questionnaire. Results: The participation rate was 87%; age range 13-17 years. The internet administration resulted in fewer missing answers. All but one multi-item scale showed internal consistency reliability (Cronbach's α > 0.70). All scales clearly discriminated between adolescents with no, a few, or many self-reported chronic conditions. The paper administration resulted in statistically significant, higher scores on 4 of 10 CHQ-CF scales compared with the internet administration (P < 0.05), but Cohen's effect sizes d were ≤ 0.21. Mode of administration interacted significantly with age (P < 0.05) on four CHQ-CF scales, but Cohen's effect sizes for these differences were also ≤ 0.21. Conclusion: This study supports the feasibility, internal consistency reliability of the scales, and construct validity of the CHQ-CF administered by either a paper questionnaire or online questionnaire. Given Cohen's suggested guidelines for the interpretation of effect sizes, i.e., 0.20-0.50 indicates a small effect, differences in CHQ-CF scale scores between paper and internet administration can be considered as negligible or small. http://repub.eur.nl/res/pub/36490/ 2007-04-01T00:00:00Z Objective: To evaluate feasibility, internal consistency, test-retest reliability, and concurrent and discriminative validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) for parents of pre-school children with 12 scales (103-items) covering physical and psychosocial domains and impact of child health on parents, in comparison with the TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL). Methods: Parents of children from a random general population sample (2 months-4 years old; n = 500) and of an outpatient clinic sample of children with respiratory disease (5 months-51/2 years old; n = 217) were mailed ITQOL and TAPQOL questionnaires; a retest was sent after two weeks. Results: Feasibility: The response was ≥80% with few missing and non-unique ITQOL-answers (<2%) in both study populations. Some ITQOL-scales (3-4 scales) showed a ceiling effect (>25% at maximum score). Internal consistency: All Cronbach's α >0.70. Test-retest Intraclass Correlation Coefficients (ICCs) were moderate or adequate (≥0.50; p < 0.01) for 10 ITQOL-scales. Validity: ITQOL-scales, with a few exceptions, correlated better with predefined parallel TAPQOL scales than with non-parallel scales. Five to eight ITQOL-scales discriminated clearly between children with few and with many parent-reported chronic conditions, between children with and without doctor-diagnosed respiratory disease and with a low and a high parent-reported medical consumption (p < 0.05). Conclusions: This study supported the evidence that the ITQOL is a feasible instrument with adequate psychometric properties. The study provided reference ITQOL scores for gender/age subgroups. We recommend repeated evaluations of the ITQOL in varied populations, especially among very young children, including repeated assessments of test-retest characteristics and evaluations of responsiveness to change. We recommend developing and evaluating a shortened ITQOL version. http://repub.eur.nl/res/pub/8401/ 2005-01-01T00:00:00Z STUDY OBJECTIVES: This study assessed the feasibility, reliability, and validity of the 28 item short child health questionnaire parent form (CHQ-PF28) containing the same 13 scales, but only a subset of the items in the widely used 50 item CHQ-PF50. DESIGN: Questionnaires were sent to a random regional sample of 2040 parents of schoolchildren (4-13 years); in a random subgroup test-retest reliability was assessed (n = 234). Additionally, the study assessed CHQ-PF28 score distributions and internal consistencies in a nationwide general population sample of (parents of) children aged 4-11 (n = 2474) from Statistics Netherlands. MAIN RESULTS: Response was 70%. In the school and general population samples seven scales showed ceiling effects. Both CHQ summary measures and one multi-item scale showed adequate internal consistency in both samples (Cronbach's alpha>0.70). One summary measure and one scale showed excellent test-retest reliability (intraclass correlation coefficient >0.70); seven scales showed moderate test-retest reliability (intraclass correlation coefficient 0.50-0.70). The CHQ could discriminate between a subgroup with no parent reported chronic conditions (n = 954) and subgroups with asthma (n = 134), frequent headaches (n = 42), and with problems with hearing (n = 38) (Cohen's effect sizes 0.12-0.92; p<0.05 for 39 of 42 comparisons). CONCLUSIONS: This study showed that the CHQ-PF28 resulted in score distributions, and discriminative validity that are comparable to its longer counterpart, but that the internal consistency of most individual scales was low. In community health applications, the CHQ-PF28 may be an acceptable alternative for the longer CHQ-PF50 if the summary measures suffice and reliable estimates of each separate CHQ scale are not required.