Parent Proxy-report Research Articles

Association between gross motor competence and health-related quality of life in (pre)schoolchildren: the mediating role of cardiorespiratory fitness

ABSTRACT Background: Motor competence, defined as a person’s ability to execute different motor skills, is directly associated with children’s physical, mental, and social development and may be essential in encouraging an active lifestyle in childhood. Although health-related quality of life (HRQoL) in children has been described as an individual’s subjective perception of the impact of health status on physical, psychological and social functioning, in very young children, a HRQoL parent-proxy report is needed since (pre)schoolchildren have problems expressing their feelings and understanding items on HRQoL instruments. In addition, the influence of motor competence on fitness levels has strong empirical support, so it seems reasonable to hypothesize that cardiorespiratory fitness might play a crucial role in the association between motor competence and HRQoL in children. Objectives: This study examined the association between gross motor competence (G-MC) and HRQoL in typically developing children, and whether this association between G-MC and HRQoL was mediated by cardiorespiratory fitness. Methods: An observational cross-sectional study with 1088 (pre)schoolchildren (51.84% boys, 48.16% girls) aged between 4 and 7 years (5.32 ± 0.60) belonging to 21 schools in the Spanish provinces of Cuenca and Ciudad Real were included. G-MC was evaluated using the MABC-2 battery, HRQoL was assessed using the KINDL-R questionnaire and cardiorespiratory fitness using the 20m-shuttle-run-test. Partial correlations, covariance models and mediation analyses were conducted. Results: The mean scores of HRQoL (physical well-being, self-esteem, friends, school and global score index) were significantly higher (p < 0.05) in children with higher G-MC. When cardiorespiratory fitness was added as a covariate, all the results remained unchanged (p < 0.05), except for physical well-being for the total sample as well as emotional well-being and the global score index for girls. Simple mediation analyses showed that cardiorespiratory fitness acted as a mediator between G-MC and physical well-being (Indirect Effect = 0.04 [95% CI = 0.01; 0.07]) for the total sample. For boys, it acted as a mediator between G-MC and physical well-being (Indirect Effect = 0.04 [95% CI = 0.00; 0.08]) and school (Indirect Effect = 0.05 [95% CI = 0.01; 0.09]), and, for girls, between G-MC and emotional well-being (Indirect Effect = 0.04 [95% CI = 0.01; 0.08]) and the global score index (Indirect Effect = 0.02 [95% CI = 0.00; 0.05]). Conclusions: The results of this study suggest that good G-MC levels are associated with better HRQoL, mainly in global score index of HRQoL and self-esteem, friends, and school dimensions in typically developing children. Further, cardiorespiratory fitness mediates the association between G-MC and the physical dimension of HRQoL in (pre)schoolchildren. Additionally, physical and academic dimensions are mediated by cardiorespiratory fitness for boys and the emotional and global score indices of HRQoL are mediated by cardiorespiratory fitness for girls. These findings provide scientific evidence that improving motor competence and cardiorespiratory fitness might be a practical strategy to increase HRQoL in children. Thus, families and the educational community should promote effective interventions and incorporate opportunities inside and outside school that aim to jointly improve motor competence and cardiorespiratory fitness.

Chronic kidney disease impacts health-related quality of life of children in Uganda, East Africa.

Limited data exist about causes of chronic kidney disease (CKD) and impact on health-related quality of life (HRQoL) in African children. We evaluated types of kidney disease in Ugandan children 0-18years and compared HRQoL in children with CKD or with benign or resolving kidney disease (non-CKD) to assess predictors of HRQoL. Demographic, socioeconomic, and clinical data were obtained for this cross-sectional study. Pediatric Quality of Life Core Scale™ (PedsQL) was used to survey 4 domains and overall HRQoL. CKD and non-CKD scores were compared using unpaired t test. HRQoL predictors were evaluated using linear and logistic regression analyses. One hundred forty-nine children (71 CKD, 78 non-CKD; median age 9years; male 63%) had the following primary diseases: nephrotic syndrome (56%), congenital anomalies of the urinary tract (CAKUT) (19%), glomerulonephritis (17%), and other (8%). CAKUT was the predominant etiology (39%) for CKD; 63% had advanced stages 3b-5. Overall HRQoL scores were significantly lower for CKD (57 vs. 86 by child report, p < 0.001; 63 vs. 86 by parent proxy report, p< 0.001). Predictors of lower HRQoL were advanced CKD stages 3b-5, primary caregiver non-parent, vitamin D deficiency, and anemia. Like other parts of the world, CAKUT was the main cause of CKD. Most CKD children presented at late CKD stages 3b-5. Compared with non-CKD, HRQoL in CKD was much lower; only two-thirds attended school. Vitamin D deficiency and anemia were potentially modifiable predictors of low HRQoL. Interventions with vitamin D, iron, and erythropoietin-stimulating agents might lead to improved HRQoL.

Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence.

To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy. We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with child-parent discrepancy in QoL reporting. Agreement was low to moderate (ICC=0.16-0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence. The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP.

Reliability and validity of the Thai pediatric quality of life inventory\u2122 3.0 neuromuscular module

BackgroundNeuromuscular disorders (NMDs) are chronic illnesses that adversely impact the lives of patients and their families. The Pediatric Quality of Life™ 3.0 Neuromuscular Module (PedsQL™ 3.0 NMM) was designed to assess health-related quality of life (HRQoL) among children with NMDs. The objective of this cross-sectional study is to evaluate the reliability and validity of the PedsQL™ 3.0 NMM Thai version.MethodsFormal permission to translate the PedsQL™ 3.0 NMM into Thai language was granted by the inventor, and the translation process followed linguistic translation guidelines. The PedsQL™ 3.0 NMM Thai version was administered to children with NMD and their parents/caregivers at the Division of Neurology, Department of Pediatrics, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand. Re-test was performed within 2–4 weeks after the initial test.ResultsOne hundred and three children with NMD and their parents or caregivers were enrolled. Internal reliability as measured by Cronbach’s alpha was > 0.7 (total score: child α = 0.88, parent α = 0.91). Test-retest reliability showed good agreement with an intraclass correlation coefficient (ICC) of 0.69 and 0.82 for the total score of the child report and the parent report, respectively. The mean (SD) quality of life total score for the child self-report was 74.9 (13.9) among ambulatory patients, and 60.7 (15.2) among non-ambulatory patients (maximum quality of life score is 100). The mean total quality of life score for the parent proxy-report was 70 (14.5) among ambulatory patients, and 55.2 (18.3) among non-ambulatory patients. The child total score was in good agreement with the parent/caregiver total score.ConclusionsPedsQL™ 3.0 NMM Thai version is a reliable and valid measure of HRQoL in Thai children with NMDs.

Quality of life (QoL) evaluation of children using cochlear implants: agreement between pediatric and parent proxy-QoL reports

Objectives: Cochlear implants are known to significantly improve the quality of life (QoL) of implanted children. However, variability exists between self-reported outcomes and parental-reported QoL questionnaires. We evaluated the QoL agreement between children and their parents following cochlear implantation and determined which factors lead to increased agreement. Methods: A cross-sectional study was performed including pediatric cochlear implant recipients and their parents. We evaluated postoperative QoL using The Pediatric Quality of Life Inventory (PedsQL). To assess agreement between pediatric and parental QoL perception, PedsQL intra-class correlations (ICCs) were calculated. Results: Thirty-five children and their parents completed QoL questionnaires. Children who were evaluated between 8–12 years of age reported highest absolute total and subscale PedsQL scores. Highest agreement was found amongst parents and children when: (1) children were between 8–12 years at QoL assessment (ICC: between 0.917[95%CI: 0.676–0.981] and 0.972[95%CI: 0.882–0.994]), and (2) when evaluating the physical health QoL domain (ICC: 0.964[95%CI: 0.849–0.992]). Conclusions: This study demonstrates high agreement (ICC > 0.8) between pediatric and parental QoL report in children aged between 8–12 years at QoL assessment. Therefore, results confirm that: (1) QoL agreement between pediatric self-report and parent proxy-report is high in chronically ill children and (2) children using cochlear implants can reliably report QoL between 8–12 years.

Objectively Measured Physical Activity And Sedentary Time In Adults With Autism Spectrum Disorder

PURPOSE: Adults with autism spectrum disorder (ASD) are purportedly inactive, but this conclusion is inferred from data on children and youth, and parent proxy reports. Objective assessment using activity monitors is needed to better understand physical activity (PA) and sedentary behavior in this population segment. The purpose of this study was to examine the general levels of PA and sedentary time in adults with ASD using accelerometry. METHODS: Eleven adults aged 18-55 (6 females; mean = 31.9, SD = 12.5) and diagnosed with ASD were included in the study. Participants wore a GT3X+ accelerometer on their right hip for 7 days during waking hours except water-based activities, and accelerometers were programmed to collect data in 60-second epochs. ≥ 10 hours of device wear was defined as a valid day and ≥ 3 valid days was required for each participant to be included in the analyses. Activity intensities were determined using the following cutoffs (counts/min): sedentary <100, low 100-499, light 500-2019, moderate 2020-5999, and vigorous >5999 (Tudor-Locke et al., 2010), and non-wear period was determined by a minimum length of 90 min of consecutive 0-counts by Choi algorithm (Choi et al., 2011). Descriptive statistics were calculated for moderate to vigorous PA, light- and low-intensity PA, sedentary time, and walking steps. RESULTS: The average total monitored length was 761.5 min/day (SD = 76.4). Results of the PA measures are as follows: moderate to vigorous PA - 42.8 min/day (SD = 30.5); light PA - 109.9 min/day (SD = 32.4); low PA - 97.9 min/day (SD = 33.9); and sedentary time - 511 min/day (SD = 84.6). The daily average percentage of time spent in moderate to vigorous PA was 5.8% (SD = 4.4), and the average step counts were 3799.7 steps/day (SD = 2953.9). 81.8% of the participants met the recommended PA guidelines of 150 min of moderate to vigorous PA per week. CONCLUSION: Although the majority of adults with ASD in this study met the PA guidelines, they were also extremely sedentary. More research is needed to determine if sedentary time, rather than PA, should be targeted to improve preventive health in adults with ASD.

Associations Between Bedroom Television And Child Versus Parent-reports Of Youth Screen Time And Sleep Duration

INTRODUCTION: Child self-report and parent proxy-report are frequently used for assessing youth sleep duration (SLP) and screen time (ST) behaviors; however, ?discrepancies in the reporting of youth SLP and ST between children and parents are not well understood. PURPOSE: The purpose of this study was to examine if family ST rules and child bedroom televisions (BTV) were associated with discrepancies between child and parent reports of youth SLP and ST behaviors. METHODS: Children aged 8-11 self-reported their SLP and ST behaviors, if they had a BTV, and demographic information. Parents report?ed ?information about their child’s SLP and ST behaviors, family ?ST rules, and family characteristics (i.e. income, marital status, etc.). The prevalence of parents reporting less healthy, similar, or healthier behaviors compared to child-reports was calculated. Separate linear regression models examined if BTV and family ?ST rules were predictive of the discrepancies in the reporting of youth’s SLP and ST between parents and children. RESULTS: Parents reported healthier child behaviors (less screen time and more sleep) compared to child reports. Linear regression models identified child BTV as a significant predictor of discrepancies in child-parent reporting for both, SLP and ST (p=.01 and p=.03, respectively), but not family ST rules (both p < .05) CONCLUSIONS: The presence of a child BTV contributes to discrepancies in child and parent reporting of youth’s SLP and ST behaviors. Future work evaluating youth SLP and ST behaviors using survey tools and national data collection protocols should capture information about the presence of a child BTV.

Health-Related Quality of Life in Thai Children with Thalassemia as Evaluated by PedsQL and EQ-5D-Y: A Single-Center Experience.

BackgroundThalassemia remains a challenging chronic disease in Thailand, but national prenatal screening, along with better treatment and management, may have improved health-related quality of life (HRQoL) for pediatric patients. We aimed to measure the HRQoL of transfusion-dependent (TDT) and non-transfusion dependent (NTDT) of these pediatric patients at our institute.MethodsWe included all patients 2 – 18 years old, with TDT and NTDT, using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) and the EuroQol Group's Five Dimensions for Youth (EQ-5D-Y) instruments. Patients and caregivers responded as appropriate for age.ResultsMean PedsQL total summary scores (TSS) (SD) of child self-reports and parent proxy-reports were 81.00 (10.94) and 78.84 (16.72) from 150 participants. Mean EQ-5D-Y VAS (SD) for children was 89.27 (11.56) and 86.72 (10.62) for parent proxies. The most problematic EQ-5D-Y dimension was “having pain or discomfort”. These scores had significant correlations between the child and parental proxy perspectives, as well as between the PedsQL and EQ-5D-Y. An age of 8 – 12 years and oral chelation therapy predicted lower self-reported PedsQL TSS. Parental proxy-report predictors for reduced PedsQL TSS and EQ-5D-Y VAS were primary school education for children, parental proxy secondary school education, Universal Coverage insurance, and TDT.ConclusionHRQoL scores of our pediatric thalassemia patients had improved from the previous decade, and these findings may represent our better standard of care. Some sociodemographic and clinical characteristics may present negative impacts on HRQoL. More exploration is needed to understand predictors and further improve HRQoL, especially for TDT patients.

Children with Functional Nausea—Comorbidities outside the Gastrointestinal Tract

To detail common comorbidities and procedures performed to evaluate functional nausea in children. In total, 63 children age 7-18years seen in a tertiary care pediatric clinic who met Rome IV criteria for functional nausea prospectively completed an Intake Questionnaire, the Pediatric and Parent-Proxy PROMIS-25 Profile v 2.0, the Pediatric and Parent-Proxy Pediatric Sleep Disturbance-Short Form 4a, and the COMPASS 31 orthostatic intolerance scale to assess comorbidities. Medical records were reviewed for diagnostic tests performed to evaluate nausea and for additional comorbidities. Summary statistics were used to determine the most common comorbidities and diagnostic yield of the procedures. Intraclass correlation coefficients assessed agreement between parent and child reports on the PROMIS scales. Patients with functional nausea experienced multisystem comorbidities. A majority reported abdominal pain, headache, orthostatic intolerance, fatigue, disturbed sleep, anxiety, constipation, allergies, and vomiting. Agreement between parent-proxy and child report of symptoms on PROMIS scales was good to excellent (intraclass correlation coefficients=.78-.83; all P<.001). Patients underwent extensive diagnostic testing: 96 endoscopic procedures, 199 radiologic tests, and 4 cholecystectomies. Most of the procedures were not diagnostically informative. Children with functional nausea have comorbidities outside the gastrointestinal tract that warrant evaluation. Gastrointestinal diagnostic tests were of low-yield in identifying a cause. Understanding the relationship with comorbidities may provide insight into etiologies for the nausea and define clinical phenotypes to better tailor care.

Convergent and Ecological Validity of Mother and Child Reports of Children’s Depressive Symptoms: Evidence from a Diverse Sample of Mother–Child Dyads

This study investigated the convergent and ecological validity of a multi-informant approach through retrospective measures and ecological momentary assessment (EMA) from mother–child dyads. In 202 mother–child dyads, mothers completed parent-proxy retrospective measures of their child’s depressive symptoms and their own depressive symptoms. Children completed self-report retrospective measures of their own depressive symptoms, self-esteem, and sleep quality; and self-report EMA of affect across 8 days. Results showed that parent-proxy and child self-report retrospective measures of depressive symptoms were weakly positively correlated (r = 0.23); this association was stronger for non-Hispanic mothers compared to Hispanic mothers (p = 0.048). Parent-proxy retrospective measures were moderately positively associated with the mothers’ own retrospectively reported level of depressive symptoms (r = 0.33). Parent-proxy and child self-report retrospective measures were negatively associated with the children’s average EMA happiness (p = 0.001 and p = 0.003, respectively), but only the children’s retrospective measures were positively associated with EMA sadness (p = 0.001). In multivariable models, the children’s retrospectively reported depressive symptoms were significantly associated with lower self-esteem and reduced sleep quality, while parent-proxy retrospective reports were only associated with the mother’s own depressive symptoms. Overall, the current study provides evidence for the convergent and ecological validity of children’s self-reports of depressive symptoms. However, there was limited validity for parent-proxy reports, and parent-proxy reports may be highly influenced by the mothers’ depression.

Self-reported and parent proxy reported functional impairment among pediatric cancer survivors and controls

BackgroundA unique and limiting component in the research on functional impairment among children has been the exclusive use of parent proxy reports about child functioning; and there is limited information regarding the impact of pediatric cancer treatment on children’s day-to-day functioning and how this is related to neurocognitive functioning. The objective of the current study was to examine a novel measure of self-reported functional impairment, and explore the relationship between self-reported and parent-reported child functional impairment in pediatric cancer survivors compared to controls.MethodsA cross-sectional cohort of survivors (n = 26) and controls (n = 53) were recruited. Survivors were off treatment an average of 6.35 years (SD = 5.38; range 1–15 years) and demonstrated an average “medium” Central Nervous System treatment intensity score. Participants completed measures of functional impairment (FI), intellectual assessment (RIST) and executive functions (NIH Examiner), while parents reported on children’s functional impairment.ResultsSurvivors were similar to controls in functional impairment. Regardless of group membership, self-reported FI was higher than parent-reported FI, although they were correlated and parent report of FI significantly predicted self-reported FI. Across groups, increased impairment was associated with four of seven Examiner scores.ConclusionsResearch regarding self-reported functional impairment of cancer survivors and its association with parent-reported functional impairment and neurocognitive deficits has been limited. Our results suggest that self-reported FI appears to be a reasonable and viable outcome measure that corresponds with and adds incremental validity to parent reported FI. While low treatment intensity may confer relative sparing of functional impairment among survivors, children report higher FI levels than parents, suggesting that FI can be of clinical utility. In conclusion, pediatric cancer survivors should be screened for self-reported functional difficulties.

Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia

BackgroundThe treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL.MethodsA cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis.ResultsA total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R2 = 0.057, F (4, 359) = 5.40, p = < 0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while predictors of a lower score was an increasing age group and parent-proxy reports(R2 = 0.075, F (5,358) = 5.80, p = < 0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81). Predictors for a lower PCHS was the use of dual chelating agents(R2 = 0.041, F (1, 362) = 15.60, p = < 0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension.ConclusionThe HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.

Visual function and quality of life in children and adolescents with anophthalmia and microphthalmia treated with ocular prosthesis.

To evaluate health-related quality of life (HR-QoL), vision-related (VR-)QoL and perceptual visual dysfunction (PVD) among individuals with anophthalmia (A) and microphthalmia (M) treated with ocular prosthesis. The study comprised 15 individuals (mean age 6.6years; range 1.7-14.1) with unilateral A or M. Three validated instruments measuring HR-QoL and VR-QoL were used: The Pediatric QoL Inventory (PedsQL), consisting of physical and psychosocial self-report and parent-proxy report (2-18years); Children's Visual Function Questionnaire (CVFQ); and Effects of Youngsters' Eyesight on Quality of Life (EYE-Q). Perceptual visual dysfunctions (PVDs) were assessed by history taking according to a specific protocol. A/M children and their parents showed low HR-QoL scores (PedsQL total score: 66.3; 69.6) compared with controls (83.0; 87.61) (p=0.0035 and <0.0001, respectively, unpaired t-test). No differences were found between A/M children and parents, but parents tended to underestimate their children's emotional state. A/M children with subnormal visual acuity (VA) for age scored lower in physical health compared with A/M children with normal VA (p=0.03, Mann-Whitney U-test). No significant VR-QoL differences between A/M children and references or between A/M children with subnormal or normal VA for age were found. More A/M children than controls exhibited PVDs in ≥1 area (7/11 versus 4/118; p<0.0001, Fisher's exact test). A/M individuals show poor HR-QoL and increased PVDs. No difference in QoL was found between children and parents, though the children tended to score lower in emotional well-being. A/M children with subnormal VA showed lower physical health score. These problems indicate the necessity of a thorough multidisciplinary assessment and follow-up of children with A/M.

Comparison of child report and parent-proxy report using PROMIS-25 in the chiropractic care for children

• Parents and their children perceived improvements in the child’s quality of life with chiropractic care. • The majority of parents assess the change/improvements in their child’s quality of life similarly to their children. • The number of days from baseline to comparative assessment of quality of life was identified as an important factor in the differences in perceived change in anxiety, peer-relationships, mobility, and pain interference. Baseline quality of life assessments were also identified as having a strong predictive effect on the difference in perceived change in quality of life.

Development of the PROMIS Pediatric Physical Activity Item Banks.

The purpose of this study was to develop self-report and parent-proxy measures of children's physical activity for clinical research and practice and to demonstrate a valid and reliable instrument of children's lived experience of physical activity as reported by the children themselves or their parent proxies. This study involved qualitative development of item pools followed by 2 cross-sectional validity and reliability studies. The National Institutes of Health Patient Reported Outcome Measurement Information System (PROMIS) instrument development standards were applied to create child self-report and parent-proxy physical activity instruments from previously developed, content-valid pools of physical activity items. Each item used a 7-day recall period and had 5 response options. Item bank calibration was based on national samples totaling 3033 children aged 8 to 17years and 2336 parents of children aged 5 to 17years. Quantitative analyses included reliability assessments, factor analyses, item response theory calibration, differential item functioning, and construct validation. The final item banks comprised 10 items each. The items were selected based on content and psychometric properties. The item banks appeared to be unidimensional and free from differential item functioning. They showed excellent reliability and a high degree of precision across the range of the latent variable. Child-report and parent-proxy 4- and 8-item fixed-length instruments were specified. The instruments showed moderate correlation with existing self-report measures of physical activity. The PROMIS Pediatric Physical Activity instruments provide precise and valid measurement of children's lived experiences of physical activity. The availability of the PROMIS Pediatric Physical Activity instruments will support advances in clinical practice and research that require measurement of pediatric physical activity by self- and parent-proxy report.

Systematic Review With Meta‐analysis of the Health‐related Quality of Life in Children With Celiac Disease

The aim of this article is to systematically review and meta-analyze the published data on the comparison of the health-related quality of life (HRQOL) in children and adolescents with celiac disease (CD) and healthy children. Moreover, the meta-analysis was performed to compare the parent proxy-report and child self-report of HRQOL. The databases of PubMed, Embase, Scopus, and Cochrane library were searched from inception to April 2019 to identify observational studies that evaluated the HRQOL in children with CD. Studies comparing the HRQOL in celiac patients and healthy children, and also comparing the parent's proxy-report and child self-report of HRQOL were included. Comprehensive meta-analysis software was used for statistical analysis. Through our systematic search, 26 articles met our predefined inclusion criteria. The result of our meta-analysis on studies using the PedsQL questionnaire showed that the total score of HRQOL was not significantly different between celiac patients and healthy controls (SMD (95% confidence interval; CI]: -0.11[-0.45 to 0.23], P = 0.52). The result of our meta-analysis showed that the parents reported the child's diet and communication scores lower than that of children. Only 4 out of 11 studies showed a significant correlation between HRQOL and gluten-free diet (GFD) compliance and 2 of 4 studies showed a significant negative association between HRQOL and age at diagnosis. The results of the present study showed that there was no significant difference between children with CD and healthy controls regarding HRQOL. Moreover, the parental perception of their children's HRQOL was lower than the children's perception.

Reliability and validity of the PedsQL 4.0 Generic Core Scales in pediatric vision impairment

The PedsQL 4.0 is a generic health-related quality-of-life (HRQoL) instrument that has been used across many pediatric health conditions. The purpose of this study was to investigate its use in children with vision impairment and to test its ability to distinguish between visually impaired and normally sighted children. Children with vision impairment and age-matched controls underwent vision testing, including binocular best-corrected distance visual acuity. They completed the PedsQL 4.0 Generic Core Scale Child Report (ages 8-12) or Teen Report (ages 13-18), as appropriate. Parents completed the Parent Proxy Report in a room separate from their children. Analyses included descriptive statistics, intraclass correlations, t tests, and determination of Cronbach's α for subscales. A total of 70 study subjects and 44 controls were included. Groups were similar with regard to age, race, and sex. PedsQL 4.0 subscales showed no floor effects; however, some scales had ceiling effects of up to 28% in certain groups. Cronbach's α was excellent (0.88) for all subscales and reports. PedsQL 4.0 total score for children with vision impairment differed significantly from that for normally sighted children for both age groups and for both parent and child reports. Total score was also significantly associated with visual acuity. Parent and child reports correlated poorly (ICC, <0.5), highlighting the importance of both perspectives. The PedsQL 4.0 can be used to assess HRQoL in children and teens with low vision. It has internal consistency reliability, and construct validity.

A Pilot Randomized Control Trial With the Probiotic Strain Lactobacillus rhamnosus GG (LGG) in ADHD: Children and Adolescents Report Better Health-Related Quality of Life.

Objectives: This double-blind pilot randomized placebo-controlled trial examined the possible effect of the probiotic strain Lactobacillus rhamnosus GG ATCC53103 (LGG) on symptoms of attention-deficit/hyperactivity disorder (ADHD), health-related quality of life (QoL), and serum levels of cytokines in children and adolescents with ADHD.Methods: This trial evaluated 32 drug-naive children and adolescents aged between four and 17 years with a diagnosis of ADHD. The study subjects were randomly assigned to either the group that received LGG or the group that received the placebo. Assessments, comprising the ADHD Parent-Report Rating Scale-IV: Home Version; the Child Self-Report and Parent Proxy-Report of the Pediatric Quality of Life InventoryTM (PedsQLTM) 4.0 Generic Core Scale; the Parent Form (CBCL/6-18) and the Teacher Report Form (TRF) of the Child Behavior Checklist (CBCL) for ages 6–18 of the Achenbach System of Empirically Based Assessment (ASEBA); and the serum cytokines; were compared between the groups at the baseline and after 3 months.Results: Thirty-five participants were randomized, with 32 completing the study (91.4% retention). There was a significant improvement in the PedsQL Child Self-Report Total Score after 3 months of treatment in the probiotic (p = 0.021, d = 0.53), whereas there was no significant improvement in the placebo group (p = 0.563, d = 0.04). The results of psychometric parameters assessed by parents and teachers were not so straightforward. There were statistically significant differences in the levels of serum cytokines between the groups after the 3-month treatment period: IL-6 in both the probiotic (p = 0.004, d = 0.73) and the placebo groups (p = 0.035, d = 0.94); IL-10 (p = 0.035, d = 0.6); IL-12 p70 (p = 0.025, d = 0.89); and TNF-α (p = 0.046, d = 0.64) in the probiotic group only.Conclusions: Children and adolescents with ADHD who received LGG supplementation reported better health-related QoL compared to their peers who received the placebo. This suggests that LGG supplementation could be beneficial. But results with psychometric tests conducted by parents and teachers as well as differences in the levels of inflammatory cytokines were ambiguous. Based on these results, we propose some study modifications: a longer observation period (6–12 months); inclusion of more children's self-report assessments; recruitment of non-drug naive patients and the possible omission of serum cytokines measurements.Clinical Trial Registration: Medical Ethics Committee (UKC-MB-KME-19-06/16).

Self and parent-proxy rated health-related quality of life (HRQoL) in youth with obesity: are parents good surrogates?

Consideration of health-related quality of life (HRQoL) and wellbeing outcomes is important to guide healthcare services for youth with obesity, yet youth perspectives may differ from their parents. This study compared youth and parental HRQoL reports and evaluated levels of concordance across HRQoL domains and as a function of youth age, youth gender and parent informant (mother and father). 376 youths with obesity, recruited from community (N = 223) and hospital settings (N = 153), and their parents (N = 190 mothers; N = 91 fathers), completed the PedsQL. Parental and youth agreement across subgroup dyads (mother; father; child gender; child age) were evaluated using Wilcoxon signed-rank test, intra-correlations coefficients (ICCs) and Bland-Altman plots. Compared to norms, HRQoL levels (youth self-report and parental proxy reports) were lower in all domains. Both mother and fathers' HRQoL reports were significantly lower than youths, most notably in physical HRQoL. Youth-parent concordance ranged from poor to moderate (ICC = 0.230-0.618), with lowest agreement for Physical HRQOL. Mothers were better proxies with ICCs being significant in all domains. Youth-father ICCs were significant only for Social (ICC = 0.428) and School (ICC = 0.303) domains. Girl-mother agreement was significant across all domains, while girl-father agreement was significant only in the Social domain (ICC = 0.653). Both mothers and fathers were poor raters for boys, and younger youths (aged ≤ 12), with non-significant ICCs in most HRQoL domains. Parents are poor surrogates for youth HRQoL. Clinicians should be cognizant that parents are not necessarily accurate proxies for youths, and exercise caution when interpreting parent-proxy scores.

564 Use of the Pediatric Quality of Life Measure in the Burn Camps Population

Abstract Introduction The Pediatric Quality of Life Inventory (PedsQL) is a tool used to measure health-related quality of life in children and adolescents. The PedsQL measures physical, emotional, social, and academic function. Our burn camp program provides comprehensive programming in a supportive, challenging environment to enhance care of a child with a burn injury. Our camp addresses: isolation, social skill development, body image, negative beliefs, risk-taking, and academic challenges. The lessons learned at camp are unique and build lifelong success. The PedsQL will provide data on changes that are being made with our campers over time. We hypothesize positive changes in PedsQL scores with the addition of burn camp. Methods The PedsQL consists of forms for children ages 2–4, 5–7, 8–12, and 13–18. Pediatric self-report is measured in children and adolescents ages 5–18. There is a separate parent proxy-report of the child’s health-related quality of life for ages 2–18. Before camp begins, parents are mailed the parent report to fill out and are due back prior to the first day of camp. Campers fill out the form on the first day of camp. Data is entered into an excel spreadsheet. Follow up parent and child/adolescent surveys are then sent out 3 months post camp. Three month follow up data is entered and compared to original scores. Three scores are generated from the data including total score, psychosocial score, and physical health score. A higher score indicates a better Health-Related Quality of Life. Results We trialed the use of the PedsQL in our adolescent burn camp, consisting of 23 campers ages 13–18. We received 8 (34%) follow up surveys. The results of these scores are trending in a positive direction. We used the PedsQL for our burn camp program consisting of 77 campers ages 8–18. We will obtain 3 month follow up data by Dec 2019 and will assess the data and report the changes. Conclusions The PedsQL is a tool that can help our camp program track changes/progress in our campers in the areas listed above. We have seen positive changes in our small sample size and predict we will see positive changes with our larger camp population in the next few months. Applicability of Research to Practice Using outcome measures for medical specialty camps is necessary and currently lacking in the literature. The PedsQL tool is used in healthy, acute and chronic health conditions, making it applicable for burn camp programs. The PedsQL has established norms for the healthy population for benchmarking purposes and community health comparisons. This tool will help our burn camp program assess the psychosocial, physical and academic growth of our campers.