Health-related quality of life of infants from ethnic minority groups: the Generation R Study

PURPOSE: To assess whether the health-related quality of life of infants from ethnic minority groups differs from the health-related quality of life of native Dutch infants and to evaluate whether infant health and family characteristics explain the potential differences. METHODS: We included 4,506 infants participating in the Generation R Study, a longitudinal birth cohort. When the child was 12 months, parents completed the Infant Toddler Quality of Life Questionnaire (ITQOL); ITQOL scale scores in each ethnic subgroup were compared with scores in the Dutch reference population. Influence of infant health and family characteristics on ITQOL scale scores were evaluated using multivariate regression models. RESULTS: Infants from ethnic minority groups presented significantly lower ITQOL scale scores compared to the Dutch subgroup (e.g., Temperament and Moods scale: median score of Turkish subgroup, 70.8 (IQR, 15.3); median score of Dutch subgroup, 80.6 (IQR, 13.9; P < 0.001)). Infant health and family characteristics mediated an important part of the association between the ethnic minority status and infant health-related quality of life. However, these factors could not fully explain all the differences in the ITQOL scale scores. CONCLUSIONS: Parent-reported health-related quality of life is lower in infants from ethnic minority groups compared to native Dutch infants, which could partly be explained by infant health and by family characteristics

Determinants of health-related quality of life in school-aged children: A general population study in the Netherlands

Background: Health related quality of life is the functional effect of a medical condition and/or its therapy upon a patient, and as such is particularly suitable for describing the general health of children. The objective of this study was to identify and confirm potential determinants of health-related quality of life in children aged 4-11 years in the general population in the Netherlands. Understanding such determinants may provide insights into more targeted public health policy. Methods: As part of a population based cross sectional study, the Child Health Questionnaire (CHQ) Parental Form 28 was used to measure health-related quality of life in school-aged children in a general population sample. Parents of 10,651 children aged 4-11 years were interviewed from January 2001 to December 2009. Results: Multivariate and regression analyses demonstrated a declined CHQ Physical Summary score for children who had >1 conditions, disorders or acute health complaints and who were greater consumers of healthcare; children with a non-western immigrant background; and children whose parents did not work. Lower CHQ Psychosocial Summary score was reported for children who had >1 conditions, disorders or acute health complaints, boys, children of single parents and obese children. Conclusion: The best predictors of health-related quality of life are variables that describe use of health care and the number of disorders and health complaints. Nonetheless, a number of demographic, socio-economic and family/environmental determinants contribute to a child's health-related quality of life as well

Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample

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 (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

Feasibility, reliability, and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): internet administration compared with the standard paper version

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 13–7 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–.50 indicates a small effect, differences in CHQ-CF scale scores between paper and internet administration can be considered as negligible or small

Does switching from oral extended-release methylphenidate to the methylphenidate transdermal system affect health-related quality-of-life and medication satisfaction for children with attention-deficit/hyperactivity disorder?

Background: To evaluate health-related quality of life (HRQL) and medication satisfaction after switching from a stable dose of oral extended-release methylphenidate (ER-MPH) to methylphenidate transdermal system (MTS) via a dose-transition schedule in children with attention-deficit/hyperactivity disorder (ADHD). Methods: In a 4-week, multisite, open-label study, 171 children (164 in the intent-to-treat [ITT] population) aged 6-12 years diagnosed with ADHD abruptly switched from a stable dose of oral ER-MPH to MTS nominal dosages of 10, 15, 20, and 30 mg using a predefined dose-transition schedule. Subjects remained on the scheduled dose for the first week, after which the dose was then titrated to an optimal effect. The ADHD Impact Module-Children (AIM-C), a disease-specific validated HRQL survey instrument measuring child and family impact, was used to assess the impact of ADHD symptoms on the lives of children and their families at baseline and study endpoint. Satisfaction with MTS use was assessed via a Medication Satisfaction Survey (MSS) at study endpoint. Both the AIM-C and MSS were completed by a caregiver (parent/legally authorized representative). Tolerability was monitored by spontaneous adverse event (AE) reporting. Results: AIM-C child and family HRQL mean scores were above the median possible score at baseline and were further improved at endpoint across all MTS doses. Similar improvements were noted for behavior, missed doses, worry, and economic impact AIM-C item scores. Overall, 93.8% of caregivers indicated a high level of satisfaction with their child's use of the study medication. The majority of treatment-emergent AEs (> 98%) were mild to moderate in intensity, and the most commonly reported AEs included headache, decreased appetite, insomnia, and abdominal pain. Seven subjects discontinued the study due to intolerable AEs (n = 3) and application site reactions (n = 4). Conclusion: This study demonstrates that MTS, when carefully titrated to optimal dose, may further improve child and family HRQL, as well as behavioral, medication worry, and economic impact item scores, as measured by the AIM-C in subjects switching to MTS from a stable dose of routinely prescribed oral ER-MPH after a short treatment period. Furthermore, following the abrupt conversion from oral ER-MPH to MTS, the majority of caregivers reported being highly satisfied with MTS as a treatment option for their children with ADHD. Trial Registration: NCT0015198

Correction: Determinants of Health-Related Quality of Life in School-Aged Children: A General Population Study in the Netherlands.

[This corrects the article DOI: 10.1371/journal.pone.0125083.]

Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index

This study assesses the feasibility, reliability and validity of the Child Health Questionnaire-Parent Form (CHQ-PF50), consisting of I I multi-item scales covering the physical, emotional and social well-being of children. The Health Utilities Index mark 2 (HU12) was selected for comparison. Parents of 467 Dutch schoolchildren (age 5-13) were sent CHQ and HUI questionnaires. A subgroup of 79 parents of children aged 10-11 were sent a retest after 2 weeks. Feasibility: 78% response with few missing/non-unique CHQ-answers ( <1%). Internal consistency: Cronbach's alphas of .39-96 (mean .72). Item-own scale correlations were higher than item-other scale correlations. Test-retest ICCs were statistically significant for all but two CHQ scales (ICCs .31-84). Test-retest CHQ-scale means did not show statistically significant differences except for one scale ("Behavior"). Validity: the CHQ-scales, with one exception, correlated better with predefined parallel HUI domains (ICCs .26-53), than with non-parallel domains. Six CHQ scales discriminated clearly between children with and without chronic conditions and three scales discriminated between high and low medical consumption. This was at least equivalent to the discriminative ability of the HU12 in this study. Additional studies of test-retest reliability and responsiveness to change of the CHQ in varied populations are needed. From the present study and literature data on other (clinical) populations we conclude that psychometric properties of CHQ-based health status measurement justify application in pediatric outcome studies, in addition to clinical measures. (C) 2002 Elsevier Science Inc. All rights reserve

ADHD-hyperactive/impulsive subtype in adults

This is the first study to evaluate ADHD-hyperactive/impulsive subtype in a large clinical sample of adults with ADHD. The Quality of Life, Effectiveness, Safety and Tolerability (QuEST) study included 725 adults who received clinician diagnoses of any ADHD subtype. Cross-sectional baseline data from 691 patients diagnosed with the hyperactive/impulsive (HI), inattentive (IA) and combined subtypes were used to compare the groups on the clinician administered ADHD-RS, clinical features and health-related quality of life. A consistent pattern of differences was found between the ADHD-I and combined subtypes, with the combined subtype being more likely to be diagnosed in childhood, more severe symptom severity and lower HRQL. Twenty-three patients out of the total sample of 691 patients (3%) received a clinician diagnosis of ADHD - hyperactive/impulsive subtype. Review of the ratings on the ADHD-RS-IV demonstrated, however, that this group had ratings of inattention comparable to the inattentive group. There were no significant differences found between the ADHD-HI and the other subtypes in symptom severity, functioning or quality of life. The hyperactive/impulsive subtype group identified by clinicians in this study was not significantly different from the rest of the sample. By contrast, significant differences were found between the inattentive and combined types. This suggests that in adults, hyperactivity declines and inattention remains significant, making the hyperactive/impulsive subtype as defined by childhood criteria a very rare condition and raising questions as to the validity of the HI subtype in adults