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.

Exploring Well-Being Outcomes Among Persons Living with Dementia: Self-Reports Versus Caregiver Proxy Reports

A vast amount of research has focused on the development of dementia caregiving evidence-based programs (EBPs) in order to mitigate the well-known negative impacts of providing care for persons living with dementia (PLWD). In order to support efficacious results, many programs utilize a variety of both objective and subjective outcomes as typically reported by the caregiver or collected via medical history and clinical assessments. However, more recent research has attempted to understand the subjective illness experience of PLWD through self-report measures. Using data obtained from an online database (i.e., Best Practice Caregiving), that currently provides in-depth information on 44 dementia caregiving EBPs, the current study aimed to examine the number of EBPs that incorporated PLWD self-report measures on a variety of well-being outcomes. Results indicate that out of the 44 EBPs included for analysis: 1) Four out of 19 programs evaluating PLWD symptom severity/difficulty/distress used a PLWD self-report measure; 2) Eight out of 10 programs evaluating PLWD symptoms of depression used a PLWD self-report measure; 3) Five out of 10 programs evaluating PLWD quality of life/care utilized a PLWD self-report measure; and 4) One out of 9 programs evaluating ADL/IADL dependencies utilized a PLWD self-report measure. Discussion will focus on potential gaps and limitations of primarily using caregiver proxy reports to collect personal well-being outcomes for PLWD and ways in which researchers can integrate more self-report measures into intervention and programmatic evaluations.

Health-related Quality of Life of Children Treated for Non-syndromic Craniosynostosis

Background: Assessing health-related quality of life (HRQoL) allows acquisition of the subjective perspective of patients regarding their health and functioning; however, little is known about the experiences of patients living with treated craniosynostosis (CS). Methods: School-aged children (7–16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales via both self- and proxy reports.Results: Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated HRQoL as high, with no difference in HRQoL found between treated sagittal (SS) or metopic (MS) synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ) and adaptive behavior skills (ABAS). Furthermore, we observed differences in estimated HRQoL between self- and proxy reports (i.e., parents estimated child HRQoL as higher than did the children). Conclusions: Children treated for CS have a generally high HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. We found that HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.

Health-related Quality of Life Profile of Indonesian Children and Its Determinants: a Community-based Study

Background: Assessing health-related quality of life (HRQOL) and its determinants in children may provide a comprehensive view of child health. The study aimed to assess the HRQOL in Indonesian children and its determinants.Methods: We conducted a community-based cross-sectional study in the Sleman District of Yogyakarta Special Province, Indonesia, from August to November 2019. We recruited children aged 2 to 18 years old using the Sleman Health and Demography Surveillance System sample frame. We used the validated Indonesian version of Pediatric Quality of life InventoryTM (Peds QLTM) 4.0 Generic core scale, proxy-reports, and self-reports, to assess the HRQOL. Results: We recruited 633 proxies and 531 children aged 2-18 years. The mean total score of self-report and proxy-report were 89.9+ 8.5 and 93.3+6.4. There was a fair to moderate correlation between self-reports and proxy reports, with interclass correlation ranging from 0.34 to 0.47, all p<0.001. Half of the children (49.4% from proxy-report and 50.1% from self-report) reported having acute illness during the last month. Based on proxy-reports, multivariate regression analysis demonstrated lower HRQOL for children with acute health problems, younger age, history of low birth weight, abnormal delivery, lower fathers' educational level, and government-paid insurance for low-income families.Conclusion: In addition to sociodemographic determinants of a child's HRQOL, children’s health condition influences HRQOL in the general pediatric population. In low- and middle-income countries where acute infections and low birth weight are still prevalent, its prevention and appropriate interventions should improve child health.

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.

Adolescents’ proxy reports on obesity-related parenting practices: Factorial validity and reliability across four behavioral domains

Background Energy-balance behaviors are precursors to obesity shaped by the practices or strategies that many parents implement. Although key stakeholders to their families, adolescents are rarely considered to report on these obesity-related parenting practices. The aim of this study is to assess the factorial and predictive validity of adolescents’ proxy-report of parents’ obesity-related parenting across four behavioral domains. Methods This study used data from the Family Life, Activity, Sun, Health, and Eating (FLASHE) study. This study tests whether adolescents’ proxy reports about their parents’ obesity-related parenting are significantly associated with parents’ responses on their own obesity-related parenting, as well as whether these reports are significantly associated to parent-adolescent energy-balance behaviors. Factorial validity was assessed using linear regression and Confirmatory Factor Analysis (CFA), whereas predictive validity was assessed using Actor-Partner Interdependence Modeling (APIM). Results Regression results indicated that adolescents’ proxy report is significantly associated with parents’ report of their own parenting in all four domains (β = .59 − .71; p < 0.05). CFA results indicated a final factor structure that loaded significantly onto hypothesized obesity-related parenting domains (β > .30) in both adolescents and parents. APIM results indicated that both parent- (β = .32; p < 0.05) and adolescent-(β = .21; p < 0.05) reported obesity parenting for fruit and vegetable consumption were associated with their own fruit and vegetable intake. In addition, adolescent-reported physical activity parenting was significantly associated with adolescent physical activity (β = 0.23; p < 0.05). Regarding partner effects, only parent-reported parenting for fruit and vegetable consumption were significantly associated with adolescent intake of fruit and vegetables (β = 0.15, p < 0.05) and adolescent-reported physical activity parenting was significantly associated with parental physical activity (β = 0.16, p < 0.05). Neither adolescent nor parent reported parenting were significantly associated with screen time or junk food intake outcomes. Each final obesity-related parenting scale had good internal consistency (a = .74-.85). Conclusions We found that adolescent- and parent-reported obesity-related parenting were significantly associated, while adolescent-reported parenting were more influential of fruit and vegetable intake and physical activity than parent-reported parenting. These findings suggest that adolescent proxy reports may be a valid source of information on obesity-related parenting.