Sex differences in children's health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: cross-sectional findings from a large school-based sample in the Netherlands

Background Previous research has shown that female adolescents and adults report lower health status than their male peers. Possibly, this discrepancy already develops during childhood. We collected sex-specific data with the Pediatric Quality of Life Inventory (PedsQL) in a large school-based sample. Methods The online version of the PedsQL was administered to healthy Dutch children aged 5–7 years (parent proxy-report), 8–12 years (parent proxy-report and child self-report), and 13–17 years (parent proxy-report and child self-report), recruited through regular primary and secondary schools. Sex differences were assessed using t-tests or Mann–Whitney U-tests. Wilcoxon signed-rank tests and intraclass correlation coefficients served to compare parent proxy-reports with child self-reports. Multivariable linear regression analyses were used to assess the associations of sex of the child, age, and parental educational level with PedsQL scores. Results Eight hundred eighty-two parents and five hundred eighty one children were recruited from 15 different schools in the Netherlands. Parents of 8-to-12-year-olds reported higher scores on School Functioning for girls than for boys (mean difference [MD]: 6.56, p < 0.001). Parents of 13-to-17-year-olds reported lower scores on Physical and Emotional Functioning for girls than for boys (MDs: 2.14 and 5.79, p = 0.014 and p < 0.001, respectively). Girls aged 8–12 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.09, p = 0.005). Girls aged 13–17 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.67, p < 0.001), Emotional Functioning (MD: 8.11, p < 0.001), and the Total Score (MD 3.26, p = 0.004). No sex differences were found in children aged 5–7 years. Agreement between child self-reports and parent proxy-reports was poor to moderate. Conclusions Girls generally had lower PedsQL scores than boys, both in parent proxy-reports and in child self-reports. We recommend to apply sex-specific data when assessing health status using the PedsQL.

The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder

Background Most children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life. To develop sensory interventions, individually tailored outcome measures are crucially needed for the domain of sensory reactivity problems. Here, we describe the identification of relevant sensory themes according to caregivers of children with ASD according to the guidelines for developing a (parent proxy) patient-reported outcome measure set. Subsequently, we identify parallels between these themes and a well-validated and supported PROMIS® portal to facilitate implementation. Interviews with clinicians and focus groups and interviews with parents of children with ASD were used in the initial phase for concept elicitation. Codes and themes were generated by qualitative thematic data analysis on the transcripts and cognitive interviews with different parents were used for revisions. The resulting themes were compared to existing generic PROMIS-item banks and other existing questionnaires. Results A total of 11 parent-reported outcomes were identified that could be either classified as directly or indirectly related to sensory reactivity. Directly related themes comprised of: (1) sensory stimulation tolerance and (2) sensitivity to sensory stimuli. Indirectly related themes were: (3) irritable behavior (4) anxiety problems (5) mood problems (6) sleep problems (7) fatigue (8) physical complaints (9) daily functioning and participation (10) routines, structure and dealing with change and (11) problems in social interaction and communication. Seven out of 11 themes could be measured with generic PROMIS item banks. The four remaining outcomes (sensory stimulation tolerance; irritable behaviour; routines, structure and dealing with change; and sensitivity to sensory stimuli) were found suitable to be inventoried by existing PROMs. Conclusion The majority of parent-reported problems seemed related to indirect consequences of sensory reactivity, which are suitable to be measured with generic item banks. In sum, we identified a sensory-reactivity PROM (parent-proxy) set consisting of PROMIS® item banks and additional domains that together form a comprehensive and readily available outcome set for sensory reactivity problems in children with ASD.

Diet Quality of Australian Children and Adolescents on Weekdays versus Weekend Days: A Secondary Analysis of the National Nutrition and Physical Activity Survey 2011–2012

Daily routines may influence children and adolescents’ eating patterns, however the influence of days of the week on dietary intake has rarely been explored. This study aimed to examine discretionary choices intake in the context of diet quality on weekdays versus weekends. A secondary analysis was conducted using the Australian National Nutrition and Physical Activity Survey 2011–2012. Differences in discretionary choices intake and diet quality on weekdays versus weekends, were examined using ANCOVA analyses. Associations between child and parent-proxy characteristics and weekday/weekend discretionary choices intake were examined using multivariable regression models. Primary analyses included 2584 Australian 2–17-year-olds. There were small differences in discretionary choices intake and diet quality between weekdays and weekends in all age subgroups. Compared to weekdays, intakes on weekends were characterized by a higher intake of discretionary choices, and lower total Dietary Guidelines Index for Children and Adolescents (DGI-CA) scores across the age subgroups (all p < 0.01). Parent-proxy discretionary choices intake and child age were predictors of weekday and weekend discretionary choices intake. Parent-proxy obesity weight status compared with healthy weight status was a predictor of weekend intake, while parent-proxy education level was a predictor of weekday discretionary choices intake. Future intervention strategies should target discretionary choices intake on both weekdays and weekends.

COVID-19-Related Psychological and Psychosocial Distress Among Parents and Youth With Physical Illness: A Longitudinal Study

Despite the initial thrust of research aimed at understanding the impact of the COVID-19 pandemic on youth with physical illness and their parents, knowledge gaps in the literature remain, providing the impetus for additional investigation. This study described changes in psychological distress from prior to during the COVID-19 pandemic for parents and youth with physical illness, compared parent-proxy and youth self-reported perceptions of COVID-19-related psychosocial health, and modeled factors associated with psychological and psychosocial distress. There were 147 parent–youth dyads (2–16 years) from MY LIFE—a longitudinal study of youth with physical illness. The Kessler-6 (K6) measured psychological distress for the time before the COVID-19 lockdown (December 19 to March 20) and during the pandemic (December 20 to March 21) among parents and youth. COVID-19-related psychosocial health was measured using the CRISIS. Parents and youth reported increases in K6 scores (d = 0.62 and 0.38). Parent-proxy reports on the K6 were lower vs. youth self-reports prior to and during the pandemic (d = 0.63 for both). In contrast, parents reported lower proxy CRISIS scores for worries (d = 0.38) and effects of social restrictions (d = 0.52). Pandemic parent K6 scores were associated with age, combined in-person and online schooling for youth, COVID-19-related worries, and effects of social restrictions. For youth, only COVID-19-related worries and effects of social restrictions were associated with K6 scores. Parent worries were associated with youth sex, parental stress, family functioning, online and combination learning, and social restrictions. Parental depression and worries were associated with effects of social restrictions. Youth worries were associated with online and combination learning, and social restrictions. Youth disability, online learning, and worries were associated with effects of social restrictions. Few clinical factors are associated with COVID-19-related psychological and psychosocial distress. Instead, parent/family factors and youth learning environment have prominent roles in predicting outcomes and have implications for the health, education, and social services systems.

Assessing anger and irritability in children: psychometric evaluation and normative data for the German version of the PROMIS® Parent Proxy Anger Scale

Purpose Anger and irritability are common and impairing symptoms in children. The PROMIS Anger scales assess self- and parent-reported irritable and angry mood over the past 7 days. The aim of this study was to evaluate the psychometric properties of the German version of the PROMIS Parent Proxy Short Form v1.0—Anger and to provide normative data. Methods To evaluate the psychometric properties, data from the study ADOPT Epidemiology were used. In this study, the PROMIS Anger Scale was administered to a population-based sample of n = 8746 parents of children aged 8–12 years. Psychometric analyses were carried out including the investigation of distribution characteristics, factor structure, model fit, internal consistency, and congruent validity. Normative data were calculated as percentile ranks and T-scores. Results The PROMIS Anger Scale demonstrated good psychometric properties, including satisfactory distribution characteristics, unidimensionality, good internal consistency as well as congruent validity. German normative data for the PROMIS Anger Scale are presented. Conclusion Based on first psychometric analyses, the German version of the PROMIS Anger Scale can be recommended for use in research and practice; however, further investigations using clinical data are needed. The normative data will allow researchers and clinicians an interpretation of the test scores in future applications.

Concordance of Child Self-Reported and Parent Proxy-Reported Posttraumatic Growth in Childhood Cancer Survivors

This article aimed to analyze concordance of parent- and child-reported child posttraumatic growth (PTG) following pediatric cancer, the influence of the parents’ own level of PTG on the level of concordance and the influence of the parents’ and the child’s own level of PTG on the parents’ proxy reports of PTG in the child. The sample included 127 parent–child dyads. The children provided self-reports of PTG and the parents provided reports of their own as well as the child’s PTG. Overall, the results showed poor parent–child agreement on the child PTG, with the parents proxy-reporting higher levels of PTG than the children. The parents’ proxy reports of the child PTG were the most accurate at the lowest levels of the parents’ own level of PTG. The parents’ own level of PTG was a stronger predictor of the parents’ proxy reports than the child self-reported PTG. The results suggest that parents are not very accurate reporters of PTG in the child; therefore, their reports should be completed with child self-reports whenever possible.