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.

Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks

Background Person-reported outcomes measurement development for rare diseases has lagged behind that of more common diseases. In studies of caregivers of patients with rare diseases, one relies on proxy report to characterize this disability. It is important to measure the child’s disability accurately and comprehensively because it affects caregiver burden. We aimed to create a condition-specific caregiver proxy-report measure for Duchenne Muscular Dystrophy (DMD) in order to understand the impact of DMD on the caregiver. Drawing on relevant item banks from the Patient-Reported Outcome Measurement Information System (PROMIS), we sought to confirm their reliability and validity in the target sample of DMD caregivers. Methods This web-based study recruited DMD caregivers via Rare Patient Voice, patient-advocacy groups, and word of mouth. Recruitment was stratified by age of the caregiver’s child with DMD, which broadly represents stages of DMD progression: 2–7, 8–12, 13–17, and > 18. Telephone interviews with DMD parent-caregivers pretested possible measures for content validity. The web-based study utilized an algorithm to categorize respondents’ ambulatory status for tailored administration of PROMIS Parent-Proxy items as well as some new items developed based on caregiver interviews. Item response theory analyses were implemented. Results The study sample included 521 DMD caregivers representing equally the four age strata. The proxy-report measure included the following domains: fatigue impact, strength impact, cognitive function, upper extremity function, positive affect, negative affect, sleep-device symptoms, and mobility. The first five domains had strong psychometric characteristics (unidimensionality; acceptable model fit; strong standardized factor loadings; high marginal reliability). Negative Affect, covering anger, anxiety, depressive symptoms, and psychological stress, fit a bifactor model with good model fit, high marginal reliability, and strong factor loadings. The Sleep-device symptoms domain was not unidimensional, and the mobility domain did not have a simple structure due to residual correlations among items at opposite end of the mobility-disability continuum. These two domain scores were retained as clinimetric indices (i.e., uncalibrated scales), to achieve the overall goal of having a content-valid DMD-specific measure across all stages of disease severity. Conclusions The present study derived a DMD-specific proxy-report measure from PROMIS item banks and supplemental items that could potentially be utilized in caregiver research across all stages of the care recipient’s DMD. Future research will focus on assessing the responsiveness and validity of the measure over time and its comparison to DMD patient self-report.

EQ-5D-5L in Schizophrenia: differences between patients and nurses’ reports

Purpose To examine the differences between patient-reports and proxy-reports by nurses of EQ-5D-5L responses among patients with schizophrenia. Methods This study was conducted in June–September 2019 in Duren Sawit Regional Public Hospital in Jakarta, Indonesia. The self-report data were obtained by interviewing the patients and the proxy-report data were obtained from the psychiatric nurses. The patients’ Positive and Negative Syndrome Scale (PANSS) scores were obtained from their medical records. The data were collected in two time points: (1) when the patients moved from the acute to the quiet rooms (first-test) and (2) when they were discharged from the hospital (second-test). The self and proxy report scores were analysed by the Wilcoxon matched-pairs signed-ranks test and their relationship with the PANSS scores using Spearman's rank correlation coefficient. Results There were 206 patients in the final sample. The majority are male (56.8%) with a mean age of 37.5 years (SD = 12.05). Significant differences between the two reports were found in three domains (i.e., self-care, usual activities, and pain/discomfort) in the first-test and two domains (i.e., usual activities and pain/discomfort) in the second-test. Concerning the relationship with the PANSS scores, only three significant correlations were found, all in the proxy-version and in the second-test: mobility (r = 0.139), anxiety/depression (r = 0.2523), and utility scores (r = − 0.176). Conclusions The poor-to-fair agreement between patients and nurses reports and the poor correlation with the PANSS scores suggested that it is difficult to decide which report best represents the patients’ health status.

A systematic review of tools designed for teacher proxy-report of children’s physical literacy or constituting elements

Background Physical literacy (PL) in childhood is essential for a healthy active lifestyle, with teachers playing a critical role in guiding its development. Teachers can assist children to acquire the skills, confidence, and creativity required to perform diverse movements and physical activities. However, to detect and directly intervene on the aspects of children’s PL that are suboptimal, teachers require valid and reliable measures. This systematic review critically evaluates the psychometric properties of teacher proxy-report instruments for assessing one or more of the 30 elements within the four domains (physical, psychological, cognitive, social) of the Australian Physical Literacy Framework (APLF), in children aged 5–12 years. Secondary aims were to: examine alignment of each measure (and relevant items) with the APLF and provide recommendations for teachers in assessing PL. Methods Seven electronic databases (Academic Search Complete, CINAHL Complete, Education Source, Global Health, MEDLINE Complete, PsycINFO, and SPORTDiscus) were systematically searched originally in October 2019, with an updated search in April 2021. Eligible studies were peer-reviewed English language publications that sampled a population of children with mean age between 5 and 12 years and focused on developing and evaluating at least one psychometric property of a teacher proxy-report instrument for assessing one or more of the 30 APLF elements. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance was followed for the conduct and reporting of this review. The methodological quality of included studies and quality of psychometric properties of identified tools were evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance. Alignment of each measure (and relevant items) with the APLF domains and 30 elements was appraised. Results Database searches generated 61,412 citations; reduced to 41 studies that evaluated the psychometric properties of 24 teacher proxy-report tools. Six tools were classified as single domain measures (i.e. assessing a single domain of the APLF), eleven as dual-domain measures, and seven as tri-domain measures. No single tool captured all four domains and 30 elements of the APLF. Tools contained items that aligned with all physical, psychological, and social elements; however, four cognitive elements were not addressed by any measure. No tool was assessed for all nine psychometric properties outlined by COSMIN. Included studies reported a median of 3 out of nine psychometric properties. Most reported psychometric properties were construct validity (n = 32; 78% of studies), structural validity (n = 26; 63% of studies), and internal consistency (n = 25; 61% of studies). There was underreporting of content validity, cross-cultural validity, measurement error, and responsiveness. Psychometric data across tools were mostly indeterminate for construct validity, structural validity, and internal consistency. Conclusions There is limited evidence to fully support the use of a specific teacher proxy-report tool in practice. Further psychometric testing and detailed reporting of methodological aspects in future validity and reliability studies is needed. Tools have been designed to assess some elements of the framework. However, no comprehensive teacher proxy-report tool exists to assess all 30 elements of the APLF, demonstrating the need for a new tool. It is our recommendation that such tools be developed and psychometrically tested. Trial registration This systematic review was registered in the PROSPERO international prospective register of systematic reviews, with registration number CRD42019130936.

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.

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.

A New Decade of Healthy People: Considerations for Comparing Youth Physical Activity Across 2 Surveillance Systems

Background: Healthy People 2030 includes objectives to increase meeting the aerobic physical activity guideline for ages 6–13 years (of ages 6–17 y, monitored by National Survey of Children’s Health [NSCH]) and grades 9 to 12 (mostly aged 14–18+ y, monitored by Youth Risk Behavior Survey [YRBS]). This study compares methodologies, prevalence, and patterns of meeting the guideline, particularly for overlapping ages 14–17 years. Methods: Nationally representative surveys, 2016–2017 NSCH (adult proxy report, 6–17 y) and 2015 and 2017 YRBS (self-report, grades 9–12), assess meeting the guideline of ≥60 minutes of daily moderate to vigorous physical activity. Prevalence and odds ratios were estimated by age group and demographics. Results: For youth aged 14–17 years, 17.4% (95% confidence interval [CI], 16.1–18.7; NSCH) and 27.0% (95% CI, 25.6–28.5; YRBS) met the guideline. 25.9% (95% CI, 24.8–27.2) aged 6–13 years (NSCH) and 26.6% (95% CI, 25.3–28.0) in grades 9 to 12 (YRBS) met the guideline. Across surveys, fewer females (P < .001) and Asian youth (P < .001 except among NSCH 14–17 y) met the guideline. Conclusions: Neither methodology nor estimates for meeting the aerobic guideline are similar across surveys, so age continuity between juxtaposed estimates should not be assumed by magnitude nor age for separate Healthy People 2030 youth physical activity objectives.

Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

ObjectiveTo examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech.DesignA cross-sectional survey.SettingData were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony.Participantsn=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained.Main outcome measuresCaregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0).ResultsThe analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460).ConclusionsCaregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.Trial registration numberDRKS00013628.

Self-Report and Caregiver Proxy-Report Agreement of Perceived Chronic Stress and Mutuality in Poststroke Aphasia

Background People with aphasia (PWA) report higher levels of stress in comparison to stroke survivors without aphasia. If untreated, chronic stress is known to have detrimental effects to the body and brain and can negatively impact health and well-being. According to extant literature, self- and proxy-report agreement on objective domains is higher than on subjective domains, like chronic stress. In addition, high levels of mutuality, also known as shared feelings between two people, have been strongly associated with low levels of stress in stroke survivors. Little is known, however, of the agreement between self-report and caregiver proxy-report on perceived chronic stress or mutuality in PWA. Purpose The proposed study sought to examine (a) the degree of agreement between caregiver proxy-report and PWA self-report on perceived stress and (b) the relationship between perceived stress and mutuality between PWA and their caregivers. Method The Modified Perceived Stress Scale and the Mutuality Scale were administered to 21 PWA/caregiver dyads. An independent-samples t test was conducted to determine if there were significant differences in perceived stress and mutuality as reported by PWA, their caregiver, and their caregiver's proxy-report. A Pearson correlation was performed to determine the level of agreement across questionnaires. Results There was a moderate correlation between the proxy-report and self-report for perceived stress. On average, proxy-reports for perceived stress were significantly higher than PWA self-reports. Overall, mutuality was high among the dyads. There was moderate agreement between caregiver's mutuality and proxy-report agreement on perceived stress. Lastly, our findings do not indicate that caregiver's perceived stress influenced their perception of the PWA's perceived stress. Conclusion The results of this study provide support for the use of proxy-derived information in perceived stress with the use of a mutuality scale.