Child-reported Scores Research Articles

Intradyadic Correlation Between Parent-reported and Child-reported Quality of Life in Patients With Anorectal Malformation and Hirschsprung's Disease in Comparison to Healthy Controls

BackgroundQuality of life (QOL) is an important clinical endpoint in paediatric chronic conditions. How parent-proxy reports differ from child self-reported QOL in patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) has not been well examined to date. This study evaluates agreement between parent-proxy and child-reported QOL scores in ARM and HD patients compared to healthy controls. MethodsWe recruited ARM and HD patients aged 5–17 years and their parents at four tertiary referral centres between December 2020 to February 2023 who had corrective surgery done >12 months prior. Healthy controls were age-matched and gender-matched. They completed the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and General Well-Being (GWB) Scale. The questionnaires were administered in parallel parent-proxy-report and child self-report formats. Appropriate statistical analysis was performed with p < 0.05 significance. Data are reported as median (interquartile range). Ethical approval was obtained. ResultsThere were 65 ARM, 54 HD and 83 controls. There were no significant differences between parent-reported scores and child-reported scores overall in the Total, Psychosocial Health and Physical Health components of Core Scales for ARM, HD and controls. However, parent-reported scores were significantly higher than child-reported scores overall in ARM, HD and controls in the GWB Scale. ConclusionOur findings show that parent-rated and child-rated overall QOL was similar in Core Scales for ARM, HD, and controls. However, parents overestimated child's overall GWB for ARM, HD and controls. This highlights the importance of capturing the perspectives of both parents and children to inform strategies to improve patient care. Level of EvidenceLevel III.

Association between Childhood Asthma Control Test scores and lung pathophysiologic indicators in longitudinal measurements.

Childhood Asthma Control Test (C-ACT) is a well-validated questionnaire for asthma controls among 4-11 years old children. This study aims to examine if longitudinal C-ACT score changes could also reflect lung pathophysiologic changes. Thirty-seven children (43% female) aged 5 to 10 years old with mild or moderate asthma were followed up for 6 weeks with bi-weekly assessments of C-ACT, airway mechanics, lung function and respiratory inflammation. Associations of longitudinal changes in C-ACT score with lung pathophysiologic indicators were evaluated using linear mixed-effects models. A two-point worsening of total C-ACT score (sum of child and caregiver-reported) was associated with significant decreases in forced expiratory volume during the 1st second (FEV1) by 1.7% (P=0.04) and forced vital capacity (FVC) by 1.6% (P=0.01) and increased total airway resistance [airway resistance at 5 Hz (R5)] by 3.8% (P=0.05). A two-point worsening in child-reported score was significantly associated with 3.1% and 2.5% reductions in FEV1 and FVC, respectively, and with increases in R5 by 6.5% and large airway resistance [airway resistance at 20 Hz (R20)] by 5.5%. In contrast, a two-point worsening of caregiver-reported score was associated with none of the concurrent lung pathophysiologic measurements. Worsening of total C-ACT score was significantly associated with increased respiratory inflammation [fractional exhaled nitric oxide (FeNO)] in a subset (n=23) of children without eosinophilic airway inflammation. C-ACT scores were associated with none of the small airway measures. In children with mild or moderate asthma, longitudinal C-ACT score changes could reflect acute changes in large airway resistance and lung function. Measures of small airway physiology would provide valuable complementary information for asthma control. Asthma phenotype may affect whether C-ACT score could reflect respiratory inflammation.

Cardiorespiratory fitness and health-related quality of life in survivors of childhood central nervous system tumours

PurposeWe assessed cardiorespiratory fitness and health-related quality of life (HRQoL) in survivors of childhood central nervous system (CNS) tumours.MethodsParticipants were recruited from the National Children’s Cancer Service in Children’s Health Ireland at Crumlin. Inclusion criteria included diagnosis of a primary CNS tumour, aged between 6 and 17 years, between 3 months and 5 years post completion of oncology treatment, independently mobile, and deemed clinically appropriate to participate by treating oncologist. Cardiorespiratory fitness was assessed using the six-minute walk test. HRQoL was assessed with the PedsQL Generic Core Scales, Version 4.0.ResultsThirty-four participants (n = 16 male) were recruited, with a mean age of 12.21 ± 3.31 years and a mean time since completion of oncology treatment of 2.19 ± 1.29 years. Mean six-minute walk distance (6MWD) achieved was 489.56 ± 61.48 m, equating to the 8th percentile overall. 6MWD was significantly reduced when compared to predicted population norms (p < 0.001). PedsQL parent proxy-report and child-report scores were significantly lower when compared to healthy paediatric norms (p < 0.001 – p = 0.011). A significant positive correlation was found between 6MWD and both parent proxy-report (r = 0.55, p < 0.001) and child-report (r = 0.48, p = 0.005) PedsQL total scores.ConclusionSurvivors of childhood CNS tumours present with impaired cardiorespiratory fitness and HRQoL. Higher levels of cardiorespiratory fitness are associated with higher levels of HRQoL.Implications for Cancer SurvivorsRoutine screening of cardiorespiratory fitness and HRQoL in survivors of childhood CNS tumours may be beneficial. Healthcare providers should encourage and provide education on the potential benefits of physical activity to improve overall quality of life.

The Proposed Specifiers for Conduct Disorder (PSCD) in Iranian School-Attending Adolescents: A Multi-Informant Validation Study of the PSCD Parent- and Youth Self-Report Versions

The Proposed Specifier for Conduct Disorder (PSCD) was developed to measure the broad psychopathy construct with grandiose-manipulative, callous-unemotional, daring-impulsive, and conduct disorder subscales. This study tested the psychometric properties of Persian parent-and-child self-report PSCD versions with 974 parents (86% mothers) and children/adolescents (46.5% boys) dyads. Results showed that with some modifications the proposed hierarchical four-factor structure for both PSCDs was confirmed and was found to be invariant across gender. Across versions, all PSCD scores were internally consistent and demonstrated expected correlations with parent-reported externalizing problems, anxiety/depression, and poor school performance, supporting the PSCDs scores’ validity. This study also is the first to examine and establish acceptable to excellent parent-child agreement of PSCD scores. Finally, all PSCD child-report scores offered small though significant incremental validity over their corresponding PSCD parent-version scores in predicting parent-reported conduct problems and proactive aggression. Findings indicated that both Persian PSCDs may hold promise for assessing psychopathy components in Iranian school-attending adolescents and generating additional research on this topic.

Quality of life in paediatric burn patients with non-severe burns

BackgroundBurns are common worldwide, and the vast majority are non-severe burns of less than 20% of the total body surface area (TBSA). In Australia, paediatric burns account for a third of all burn admissions, thus understanding the quality-of-life outcomes after a non-severe burn in children is important. MethodsThis retrospective cohort study describes a paediatric cohort from Western Australia with non-severe burns occurring between 2018 and 2020 and characterises the child’s quality-of-life outcomes which is measured using the Paediatric quality of life survey (PedsQL). The PedsQL included a parent-report and child-report assessment, each with a physical function domain and a psychosocial function domain which comprised of an emotional, a social and a school category. ResultsData collected from 249 patients; 50.6% were male, 45.6% were toddlers. The most common cause was scald (48.19%), the majority had burns smaller than 5% TBSA (91.97%), and most included visible areas such as head, neck or hands (77.51%). The parent-report PedsQL scores were significantly different for both physical and psychosocial domains between the different age groups (p = 0.002, p = 0.001, respectively) and for burn cause (p = 0.004, p = 0.005, respectively). For child-reported scores we found evidence of an effect of burn cause across both domains that did not reach a statistical significance (p = 0.076, p = 0.078, respectively). The psychosocial functions in both the parent-report and the self-report were significantly different for the socioeconomic status groups (p = 0.015, p = 0.032, respectively). Quality of life scores were critically low in 16.46% of paediatric burn patients at three months after burn. ConclusionParent-reported and child-reported psychosocial function was significantly poorer in higher socioeconomic groups, for older children and for those with flame burns. About 16% of patients had scores below the critical cut off. These data provide insight into the quality-of-life outcomes of paediatric patients with non-severe burns, allowing future studies to investigate burn prevention strategies and services to help paediatric burn patients in their recovery.

Social Deprivation and Congenital Upper Extremity Differences—An Assessment Using PROMIS

Social deprivation, a measure of socioeconomic status, has been shown to negatively affect perceptions of orthopedic conditions and outcomes of treatment. The objective of this study was to assess whether social deprivation correlates with subjective assessment of function in pediatric patients with congenital hand differences. Patients enrolled in the Congenital Upper Limb Differences (CoULD) registry were assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS). The PROMIS scores for Pain Interference, Peer Relations, Anxiety, Depression, and Upper Extremity (UE) function were obtained for all patients 5 years and older at initial presentation. Social deprivation was determined by the Area Deprivation Index (ADI); the index ranges from 0 to 100 with higher scores being the most deprived. The PROMIS scores were correlated with the ADI for all patients. Three hundred seventy-five pediatric patients with congenital UE differences were evaluated. Average age was 11 years, 56% were female, and 55% had bilateral involvement. Overall, PROMIS scores were within 1 SD of normal for Peer Relations, Pain, Depression, and Anxiety. However, child-reported scores for UE function (39) were more than 1 SD below the national average (50). The mean ADI for the cohort was lower than the national average, indicative of less deprivation, with 14% of patients in the most deprived national quartile. Children in the highest ADI quartile reported PROMIS scores that reflected higher Pain Interference (41 vs 45), lower Peer Relations (55 vs 50), higher Anxiety (44 vs 49), and higher Depression (43 vs 47) than children in the lowest ADI quartile. The PROMIS scores were normal for psychosocial measures in children with congenital hand differences when evaluated as an entire cohort. However, child self-reported PROMIS scores for Pain Interference, Peer Relations, Anxiety, and Depression were worse in more socially deprived areas, suggesting more psychosocial challenges in these children. Pediatric patients with congenital upper extremity differences in areas of higher social deprivation report lower psychosocial well-being. The care of these individuals must be considered within the context of their environment because they may be more at risk for negative outcomes secondary to environmental and societal stressors.

Anxiety in children and adolescents with cerebral palsy.

To describe the prevalence of, and factors associated with, anxiety in 6-18-year-old children with cerebral palsy (CP) and determine how often clinicians screen for and manage anxiety in this group. Using a population CP register as the sampling pool, 569 families were approached by email, and 172 (mean age of children 12 years 7 months [SD 3 years 5 months]; 96 males) participated. Parents and, where able, children completed the Screen for Child Anxiety Related Emotional Disorders (SCARED). Parents also completed the Strengths and Difficulties Questionnaire. Children's medical records were searched for previous anxiety diagnoses and treatments. Clinically significant anxiety was identified in 38% of children on parent reports and 46% on child reports. Girls were twice as likely to have anxiety (p = 0.02). Parent- and child-reported scores were strongly correlated (r = 0.853). Fewer parents of children with intellectual and communication impairments completed the survey. Based on the SCARED parent reports, anxiety was not identified by a clinician in 16 children (43%) with clinically significant anxiety. Anxiety symptoms are prominent among children with CP, indicating a need for routine screening. Available screening tools are unsuitable for children with more severe limitations in cognition and communication; further research is needed to address this gap.

Differences in Parent and Child Report on the Screen for Child Anxiety-Related EmotionalDisorders (SCARED): Implications for Investigations of Social Anxiety in Adolescents.

Social anxiety typically emerges by adolescence and is one of the most common anxiety disorders. Many clinicians and researchers utilize the Screen for Child Anxiety Related Disorders (SCARED) to quantify anxiety symptoms, including social anxiety, throughout childhood and adolescence. The SCARED can be administered to both children and their parents, though reports from each informant tend to only moderately correlate. Here, we investigated parent-child concordance on the SCARED in a sample of adolescents (N = 360, Mage = 13.2) using a multi-trait multi-method (MTMM) model. Next, in a selected sample of the adolescents, we explored relations among child report, parent report, and latent social anxiety scores with two laboratory tasks known to elicit signs of social anxiety in the presence of unfamiliar peers: a speech task and a "Get to Know You" task. Findings reveal differences in variance of the SCARED accounted for by parent and child report. Parent report of social anxiety is a better predictor of anxiety signs elicited by a structured speech task, whereas child report of social anxiety is a better predictor of anxiety signs during the naturalistic conversation with unfamiliar peers. Moreover, while latent social anxiety scores predict both observed anxiety measures, parent report more closely resembles latent scores in relation to the speech task, whereas child report functions more similarly to latent scores in relation to the peer conversation. Thus, while latent scores relate to either observed anxiety measure, parent and child report on the SCARED each provide valuable information that differentially relate to naturalistic social anxiety-related behaviors.

DOZ047.02: Effect of prokinetics on gastric function in children with esophageal atresia and tracheoesophageal fistula (EA-TEF)

Abstract Background To the aim of this study was to determine the effect of domperidone on gastric function in the EA-TEF cohort. Methods Five participants with previously demonstrated abnormal gastric myoelectrical activity and/or delayed gastric emptying on electrogastrography (EGG) and 13C-octanoic acid breath test (OBT), respectively, were recruited. These participants were treated with domperidone (0.2 mg/kg/dose twice a day), for a minimum of 2 weeks, and EGG and OBT investigations were repeated along with a validated PedsQL gastrointestinal symptom questionnaire. A baseline and follow-up ECG was done to check for potential QT interval prolongation. Results Mean gastric emptying half-time was135.4 minutes off therapy and 277.01 minutes on therapy (p = NS) while the mean gastric emptying coefficients were 3.34 and 3.25, respectively (p = NS). All five participants’ gastric myoelectrical activity on EGG remained abnormal. Although the mean percentage of gastric slow waves spent in normal frequency decreased by 1.65%, the post- prandial-to-resting power ratio increased by 8.452 (p = NS). Both parent- and child-reported overall PedsQL scores increased as did the child-reported PedsQL scores based on symptoms related to gastric function (p = NS). Conclusions Domperidone in standard doses did not result in significant change in gastric emptying in EA-TEF children with delayed gastric emptying. This may be due to abnormalities in gastric innervation, in children with EA-TEF. There was however an improvement in the power ratio on EGG. There was also improvement in the PedsQL scores. The lack of statistical significance may be due to our small sample size.

The relation between sleep habits, fatigue, impact on family and quality of life in children with first-time cancer and recurrent cancer

Aim: This study was planned to determine the conditions related to sleep, fatigue, and impact on family in children with Acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) who had cancer for the first time and children who had recurrent cancer. Material and Methods: The study included 74 children (41 girls, 33 boys) with a mean age of 8.11 ± 3.77 years. Children evaluated with child and parent report of Pediatric Quality of Life “and PedsQL Healthcare Satisfaction Generic Module” should be aded. Inventory (PedsQL) Cancer Module, Children’s Sleep Habits Questionnaire (CSHQ), Borg Scale and Impact on Family Scale (IPFAM). Results: There was a statistically significant difference, in terms of PedsQL parent report total score (p=0.003), between the children who had cancer for the first time and children who had recurrence cancer, and the values of latter were higher. A positive correlation was found between the PedsQL child and parent report scores for all children with cancer (p= 0.000). Conclusion: According to the results of our study, it was seen that children who have recurrent cancer had reported a better quality of life and that children and parents have similar perceptions in terms of quality of life.

Psychometric Properties of the Psychosocial Assessment Tool-Chronic Pain Version in Families of Children With Headache.

Children with headache disorders are at increased psychosocial risk, and no validated screening measures exist to succinctly assess for risk. This study examined the psychometric properties of the Psychosocial Assessment Tool-Chronic Pain, a previously adapted screening measure of risk, in a retrospective sample of families of children diagnosed with headaches. Participants included 127 children and caregivers presenting for behavioral health evaluation of headache. Children and their primary caregivers completed several psychosocial assessment measures. Internal consistency for the Psychosocial Assessment Tool-Chronic Pain total score was high (α = 0.80), and all subscale scores had moderate to high internal consistency (α = 0.597-0.88), with the exception of the caregiver beliefs subscale (α = 0.443). The total score and the majority of subscale scores on the Psychosocial Assessment Tool-Chronic Pain were correlated with caregiver- and child-reported scores on study measures. The results demonstrate that the Psychosocial Assessment Tool-Chronic Pain has adequate psychometric properties, and because of the brief administration time, ease of scoring, and accessibility of the measure, it is a promising measure of screening for psychosocial risk in this population.

Parent–Child Agreement of Child Health-Related Quality-of-Life in Maltreated Children

This article examines the differences between self-reports and parent-proxy reports of pediatric health-related quality of life among families receiving child welfare services for child physical abuse and neglect. This study assesses child well-being using a pediatric health-related quality of life measure (Pediatric Quality of Life Inventory; PedsQL 4.0) with parent-child dyads (N = 129). Child and parent reports are compared for total and domain score on the PedsQL. Child-reported scores are lower than parent-proxy reports on total and all domain scores. For the total score, 57 % of child reports are below the clinical cutoff for poor well-being compared with 19 % of parent proxy reports. Analyses indicate poor agreement between parent and child reports, with this disagreement associated with high parent anger and parental self-report of poor mental health. Fully assessing child health and well-being requires multiple perspectives of child well-being. Gaining information from both the child and the parent provides different but equally useful information.

Quality of Life and Its Determinants in a Multicenter Cohort of Children with Alagille Syndrome

To assess health-related quality of life (HRQOL) in children with Alagille syndrome (ALGS) in comparison with healthy and other liver disease cohorts, and to identify determinants of HRQOL in patients with ALGS. Within the Childhood Liver Disease Research Network prospective study of cholestasis, Pediatric Quality of Life Inventory (PedsQL) questionnaires were administered to 70 children with ALGS, 95 children with alpha-1-antitrypsin deficiency (A1ATD), and 49 children with other causes of chronic intrahepatic cholestasis (IHC) aged 5-18 years. Parent proxy PedsQL scores were recorded for children aged 2-18 years (98 ALGS, 123 A1ATD, and 68 IHC). Mean ages and total bilirubin (mg/dL) were ALGS 9.4 years; 4.4, A1ATD 9.5 years; 0.7, and IHC 10.3 years; 2.9. ALGS child PedsQL scores were lower than in healthy children and children with A1ATD (mean 73 vs 83; P = .001). Children with ALGS and IHC were similar, except in physical scores (73 vs 79; P = .05). Parents of children with ALGS perceived their children to have worse HRQOL than A1ATD (P ≤ .001) and marginally lower compared with IHC. Univariate analysis revealed ALGS child-reported scores were positively associated with better growth and inversely with total bilirubin. Growth failure, elevated international normalized ratio, and an intracardiac defect were predictive of poor parental scores (P ≤ .05). In multivariate analysis, only weight z-score remained significant for child- and parent-reported scores. HRQOL is impaired in children with ALGS compared with healthy and children with A1ATD, similar to children with IHC and is associated with growth failure, which is a potentially treatable cause of impaired HRQOL.

Late Effects, Social Adjustment, and Quality of Life in Adolescent Survivors of Childhood Leukemia

This study was conducted to examine the late effects, social adjustment, and quality of life in adolescents who had been completely treated for childhood leukemia and their parents. Participants consisted of 41 pairs of adolescent survivors (13-18 years) and their parents. Parents checked for their child's physical late effects. The Korean Version of Post-Traumatic Symptoms for psychological late effects, social functioning questionnaire for social adjustment and the PedsQL 4.0 Generic Core Scales for quality of life were completed by adolescents and parents. Data were analyzed using SPSS. Twenty out of 41 adolescents had one or more physical late effects. Adolescents showed more serious psychological late effect than parents. Five children and seven parents had above cut-off scores and they were considered the high risk group for posttraumatic symptoms. Parent-reported scores were significantly higher than child-reported scores in terms of social adjustment and emotional functioning of quality of life. Low school functioning in adolescents was associated with physical late effects. The results indicate that long-term and systematic management for childhood leukemia survivors affect positive social adjustment and can further improve quality of life.

PReS-FINAL-2295: Correlations of health related quality of life reports completed by children with lupus and parents

Some SMILEY domain scores (p < 0.05 for Effect of Self-child-report; and Social-child- and parent-reports); and child-report PedsQL total scores were also higher for LA subjects. US and LA child-report scores of SMILEY and PedsQL were higher (p < 0.05) compared to corresponding parent-report scores. For child-parent pairs, correlatons ranged from 0.3-0.7 (table 1), with lowest correlation in the Social domain. Conclusion

Quality of life in childhood immune thrombocytopenia: International validation of the kids' ITP tools

The Kids ITP Tools (KIT) is a disease-specific measure of health-related quality of life for children with immune thrombocytopenia (ITP). To facilitate use in international trials it has been cross-culturally adapted for France, Germany, the United Kingdom and Uruguay. This study assessed the validity and reliability of the translated KIT in comparison to generic quality of life measures. Children 2-18 years of age with ITP and their parents were recruited in France, Germany, the United Kingdom and Uruguay. Participants completed the KIT, PedsQL and KINDL. We examined the Pearson's correlation between these measures for our pooled sample and estimated the reliability over a 2-week time period. Findings were further explored by country. A total of 127 families (81 children self-reported) participated. Mean child-reported scores were: KIT 74.3 (SD = 15.3), PedsQL 81.3 (SD = 13.0), and KINDL 70.5 (SD = 14.3). Corresponding mean parent proxy-reported scores were: 70.6 (SD = 18.1), 75.7 (SD = 16.8) and 72.3 (SD = 12.7), respectively. Correlation between KIT and the generic measures was consistent with our a priori hypothesis (PedsQL r = 0.54, KINDL r = 0.48, both P < 0.0001). Child KIT scores for newly diagnosed ITP patients were significantly lower than for chronic ITP patients (67.3 vs. 77.3; P = 0.005). There was a significant correlation (P < 0.001) between the child and parent proxy KIT scores (ICC = 0.52). Child KIT test-retest reliability was acceptable at 0.71. The cross-culturally translated KIT is valid and reliable with acceptable correlation to the PedsQL and KINDL. There is a significant difference in child self-reported KIT scores between newly diagnosed and chronic ITP.

Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors

Health-related quality of life (HRQOL) is not only a degree of health but also reflects patient perceptions and expectations of health. For children with brain tumors, better understanding of HRQOL requires the use of complementary reports from parents and interviewer-administered reports for children. Here, we aimed to test whether or not the trait anxiety of children and the psychological distress of their parents influence children's and parents' responses to HRQOL questionnaires, and whether or not the report-administration method for children influences children's responses to HRQOL questionnaires. One hundred and thirty-four children aged 5-18 with brain tumors and one of their parents completed the Pediatric Quality of Life Inventory(™) (PedsQL(™)) Brain Tumor Module questionnaires. In addition, the children also completed the State-Trait Anxiety Inventory for Children (STAIC), and the parents also completed the Kessler-10 (K10) and health and sociodemographic characteristics questionnaires. The child questionnaires were administered either by the child (self-administered) or an interviewer. Rater-dependent perceptions about HRQOL were derived from the subscales scores of the PedsQL(™) Brain Tumor Module using structural equation modeling based on a multitrait-multimethod model. The STAIC trait-anxiety score, K10 score, report-administration method, and other health and sociodemographic factors related to each child's or parent's perceptions were identified through multiple linear regression analyses of the questionnaire responses. We used a path analysis to estimate the change in a PedsQL(™) child-reported score that occurs when interviewer-administration changes the child's perception about HRQOL. Surveys for 89 children were self-administered while those for 45 were interviewer-administered. The perceptions of the children and parents were calculated by fitting data to the model (chi-squared P=0.087, normed fit index=0.932, comparative fit index=0.978, standardized root mean squared residual=0.053, and root mean square error of approximation=0.054). The children's perception of HRQOL was affected by their STAIC trait-anxiety score (b=-0.43, 95% CI [-0.60, -0.25]). The parent's perception was affected by their child's treatment status (b=0.26, 95% CI [0.09, 0.43]), the parent'sK10 score (b=-0.21, 95% CI [-0.37, -0.04]), and by education level (b=0.17, 95% CI [0.00, 0.34]). The change in the child-reported PedsQL(™) score in relation to the method of administration ranged from -1.1 (95% CI: -3.5, 1.3) on the procedural anxiety subscale to -2.5 (95% CI: -7.6, 2.6) on the movement and balance subscale. Child-reporting of HRQOL is little influenced by the method of administration. Children's perception about HRQOL tended to be influenced by their trait anxiety, while parents' perception was influenced by their psychological distress, academic background, and their child's treatment status.

Measurement Characteristics of the Pediatric Asthma Health Outcome Measure

Introduction. The Pediatric Asthma Health Outcome Measure (PAHOM) was designed to measure quality-adjusted life years (QALYs) in children with asthma. Our objective was to compare parent- and child-reported PAHOM scores to each other, to parent-reported scores on the Juniper Asthma Control Questionnaire (ACQ), and to physician-rated asthma control. Methods. A convenience sample of primarily African-American parent–child dyads (N = 261) was recruited from asthma clinics between May 2008 and May 2010. Correlations and differences in scores between the instruments and respondents were compared across variables of interest. The sensitivity and specificity of each, relative to physician-rated asthma control, were estimated. Results. Mean (SD) parent- and child-reported PAHOM scores were significantly different, 0.91 (0.13) and 0.95 (0.08), respectively, (p < .01) and were weakly correlated (0.24). Parent-reported PAHOM and parent-reported ACQ, 5-item version (ACQ5) scores were moderately correlated (−0.69). Both the parent- and child-reported PAHOM scores distinguished between physician-rated well-controlled and not well-controlled asthma (p < .01 and p < .01, respectively). When compared with physician-rated asthma control, the areas under the receiver operating characteristic (ROC) curves for the parent-reported PAHOM and the ACQ5 were similar (p = .11), but both performed better than the child-reported PAHOM (both p < .01). Discussion. The validity of the PAHOM is supported by its moderate correlation with the ACQ and its association with physician-rated asthma control. Although intended to be administered to children, parent-reported scores were better predictors of physician-rated asthma control. Conclusions. A validation study in a more economically and ethnically diverse population is needed. Until then, we recommend the PAHOM to be administered to both parents and children.

Health-related quality of life in children with traumatic brain injury; relationship between parent–proxy report and child self-report

<h3>Introduction</h3> The ultimate aim of neurorehabilitation for traumatic brain injury (TBI) survivors is good health-related quality of life (HRQL). Despite recommendation by the WHO that self-reporting measures of HRQL in children should be used whenever possible, paediatric TBI studies have almost all have used parent–proxy report to assess HRQL. <h3>Aims</h3> (1) To examine the relationship between parent and child-report estimations of HRQL at 1 (T1), 6 (T6) and 12 (T12) months post-TBI; (2) to investigate factors influencing parent–child agreement. <h3>Methods</h3> Prospective cohort study. HRQL was measured by Paediatric Quality of Life Inventory (PedsQL). Severity of TBI was classified by admission Glasgow Coma Score (GCS), post-traumatic amnesia (PTA) and length of hospital stay (LOS). Verbal and performance IQ in the child were assessed by the Wechsler Intelligence Scale for Children-III; emotional state by the Child Behaviour Checklist (CBCL). Burden to the main carer and family were assessed by Beck Depression Inventory (BDI) and family burden of injury inventory (FBII). <h3>Results</h3> 47 TBI subjects were studied. Mean age was 11.2 yrs. 66% were boys. 51% had severe/moderate TBI, 49% mild. Significant correlations were found between parent and child report PedsQL total, physical and psychosocial summary scores at T1 (TSS, r=0.36, p=0.020; physical, r&lt;0.001; PSS, r=0.32, p=0.036), T6 (TSS, r=0.63, p&lt;0.001; physical, r=0.69, p&lt;0.001; PSS, r=0.58, p&lt;0.001) and T12 (r=0.57, p=0.001; physical, r=0.74, p&lt;0.001; PSS, r=0.45, p=0.008) post-TBI. In contrast to other chronic disorders, parents tended to score HRQL higher than children. However, mean differences between parent and child scores were not significant for any domain at any time point, with the exception of school domain at T6 (mean bias, −7.91, SD=21.88, p=0.022) and T12 (mean bias, −7.83, SD=19.55, p=0.036). Differences between parent and child-report scores did not correlate with VIQ or PIQ, but did significantly correlate with parent and child emotional state at T1 and T6 (T6, BDI, r=−0.40, p=0.010; FBII, r=−0.56, p=0.001; CBCL total problem score, r=−0.511, p=0.001). By T12, differences only correlated with injury severity (admission GCS, r=0.44, p=0.011; PTA, r=−0.51, p=0.009; LOS, r=−0.49, p=0.008). <h3>Conclusion</h3> Parent and child-report HRQL generally agree, despite emotional state influencing assessment. Parents tend to underestimate HRQL after TBI.

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life.