Parent Proxy-report Research Articles

A Quantitative Comparison of Patient-Reported Outcomes Among Pediatric Patients and Parent Proxies after Craniofacial Surgery

INTRODUCTION: To identify salient patient-reported outcomes related to mental and social health in patients undergoing craniofacial surgery and compare those outcomes with parent proxy reports of the same. We hypothesize that patient and parent proxy reports differ. METHODS: Patients aged 8–17 years undergoing craniofacial surgery between June 2021 and January 2022 and parent proxies completed the following PROMIS domains before and 3 months after surgery: Psychological Stress, Positive Affect, Peer Relationships, Family Relationships, Anxiety. Differences in mean T-scores were compared pre- and postoperatively. Minimal important change (MIC) was defined as a difference of three or more T-score points in the positive or negative direction and represents the threshold above which participants perceived an important difference. RESULTS: Fifty-two participants were identified: 30 declined, 14 were lost to follow-up, and 8 met all study endpoints (n = 4 patients; n = 4 parents). Three PROMIS domains demonstrated an MIC in the patient cohort and two in the parent cohort (Table). Amongst patients, Psychological Stress and Anxiety metrics improved (MIC –3 and –6.5, respectively), whereas perceptions related to Family Relationships worsened (MIC –10.4). Parental perceptions of Positive Affect and Family Relationships worsened (MIC –6.9 and –5.5, respectively). Table. - A Comparison of the Change in PROMIS Ratings by Patients and Parents. PROMIS domain Patient (n = 4) Parent (n = 4) Preoperative, postoperative T-scores (ave.) Change Preoperative, posteroperative T-scores (ave.) Change Psychological stress 56.5, 53.5 –3* 53.2, 55.6 +2.4 Positive affect 49.5, 47 –2.5 48.7, 41.7 –6.9* Peer relationships 50, 48 -2 44, 44.5 +0.5 Family relationships 54, 43.6 –10.4* 52, 46.5 –5.5* Anxiety 56, 49.5 –6.5* 52, 52.4 +0.4 CONCLUSION: Patients reported less stress and anxiety after craniofacial surgery; however, parents perceived a decline in their child’s positive affect. Perceptions related to worsening family relationships correlated between the groups. Additional data are required to determine the strength of the correlation; however, these data call into question who should be making decisions regarding craniofacial care.

Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports

PurposeThe aim of this study is to assess the level of agreement between adolescents’ self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness. MethodsA cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)—asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient). ResultsTwo hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11–0.34; healthy adolescents: 0.01–0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement. DiscussionParent-proxies overestimated adolescents’ QOL compared to adolescents’ report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source.

The Difference in the Quality of Life of Korean Children With Attention-Deficit/Hyperactivity Disorder Between Before and After COVID-19.

ObjectivesThis study aimed to compare the quality of life (QoL) of children with attention-deficit/hyperactivity disorder (ADHD) before and during coronavirus disease-2019 (COVID-19) and to examine how their QoL is affected by emotional and environmental factors during COVID-19.MethodsParticipants in the pre-COVID-19 (n=43) and COVID-19 (n=36) groups were recruited from the same university hospital. The Pediatric Quality of Life Inventory (PedsQL) 4.0 Child Self-report, the Children’s Depression Inventory (CDI), the Revised Children’s Manifest Anxiety Scale (RCMAS), the PedsQL 4.0 Parent Proxy Report, and the Conners’ Parent Rating Scale (CPRS) were employed. Independent t-tests, Pearson’s correlation analysis, and multiple regression analysis were conducted.ResultsCaregivers assessed the children’s QoL more negatively than the children themselves in both groups. Children with ADHD evaluated their physical function more negatively and anxiety was significantly higher in the COVID-19 group. In the COVID-19 group, the PedsQL child self-report was significantly predicted by the CPRS, the CDI, and environmental factors (i.e., relation to child and monthly household income).ConclusionChildren with ADHD in the COVID-19 group had a numerically lower QoL and significantly higher anxiety. To improve QoL, it is important to deal with not only depression but also ADHD symptoms and environmental factors.

Cross-Cultural Validation of Health and Quality of Life Measures for Children in Hong Kong.

Objective The Pediatric Quality of Life Inventory (PedsQL™) 4.0 is a health-related quality of life (HRQOL) measure designed for clinical practice and research, health policy evaluation, and general population surveys. There is a dearth of instruments measuring quality of life in children which are available in Chinese and validated for Chinese populations. Therefore, this study attempted to establish the Hong Kong populations' norms for the Chinese version of PedsQL™ and examined the psychometric properties of the measure for this population. Methods Sixty-nine children (aged 7 to 12 years) and their parents completed the child self-report and the parent proxy report, respectively, of the PedsQL™ 4.0 Generic Module. To evaluate construct validity, a group comparison of children with special educational needs (SEN) (n = 21) and those with typical development (TD) (n = 48) was conducted. Differences based on age group and gender and parent–child agreement on the perception of the child's HRQOL were also examined. Results Children with SEN had a lower quality of life perception than those with TD in the physical, social, and schooling domains. No significant differences in emotional health were found between the two groups. The differences between the children with SEN and with TD varied based on age group and gender. The differences between the parents' and children's perceptions of the children's HRQOL were insignificant in this sample. Conclusion Norms for the Chinese version of the PedsQL™ 4.0 Generic Module for the Hong Kong population were established in the study, and both the child self-report and parent proxy report were found to be reliable and valid for this population.

Predictors of burnout and distress in parents of children with autism spectrum disorder during COVID-19 home confinement

ABSTRACT The study’s purpose was to investigate the mental health and related variables of parents with an autism spectrum disorder (ASD) child during COVID-19 home confinement. The study data is based on the evaluation of online self-report questionnaires that assess parental distress, burnout, and coping levels, as well as parent-proxy reports of autism severity and related behavioral issues, as described by the parents of 79 children with ASD and their 83 typically developing age- and sex-matched opponents. The burnout and adaptive coping levels of the parents with ASD children were greater than those of the controls. However, there was no significant difference in terms of general distress levels. Increased irritability was the most commonly reported symptom among children with ASD. However, behavioral issues in children were the strongest predictor of parental burnout, whereas maladaptive coping skills were linked to general distress. This study emphasizes the significance of treating the behavioral issues of children with ASD and the coping strategies of their parents for the mental well-being of this vulnerable population and their parents during home confinement.

Comparing health-related quality-of-life scores in well-controlled asthmatic children and adolescents with their parents using PedsQL 3.0 asthma scales in our practice

Introduction Bronchial asthma strongly affects the health-related quality of life (HRQOL) of children in many aspects including physical, emotional, social, and school functioning. Child self-reports of QOL are valid for measuring HRQOL, but the parent proxy reports also provide additional important information. Aim To assess the agreement between the child self-reports of HRQOL and the parent proxy reports among the children and adolescents with well-controlled bronchial asthma. Patients and methods This cross-sectional study was conducted on 75 asthmatic patients aged between 8 and 18 years and their parents who were being followed up in the allergy outpatient clinic in the Department of Pediatrics, Cairo University. HRQOL was assessed by the PedsQL 3.0 asthma module. Results The mean±SD age of the patients was 10.08±1.70 years. Distribution of agreement between patients and parents showed that 40 (53.3%) cases showed agreement in different domains. Agreement between child and parent-by-proxy was 54.3% in the asthma domain, 45.3% in the treatment domain, 34.7% in the worry domain, and 17.3% in the communication domain. A statistically significant correlation was found between QOL in child and parent in all domains; the correlation was strong in the asthma and worry domains and weak in the treatment and the communication domains, where in the asthma domain, confidence interval (CI) was 0.803 (0.690–0.875), with a P value of 0.000; in the treatment domain, CI was 0.305 (0.080–0.499), with a P value of 0.009; in the worry domain, CI was 0.539 (0.357–0.682), with a P value 0.000; and finally, in the communication domain, the CI was 0.374 (0.163–0.552), with a P value of 0.000. Conclusion There was a lack of convergence between the child self-report and the parent’s report of the PedsQL 3.0 asthma module. Asthmatic children’s self-reports were more accurate than parent proxy reports for the assessment of HRQOL. Parent proxy reports should be spared to very young children or children who lack the logical or analytical ability needed for answering the questionnaire.

The Australian and New Zealand Fontan Registry Quality of Life Study: Protocol for a population-based assessment of quality of life among people with a Fontan circulation, their parents, and siblings

IntroductionAdvances in the care of patients with single-ventricle congenital heart disease have led to a new generation of individuals living with a Fontan circulation. For people with Fontan physiology, physical,...

A Multi-Informant Assessment of Food Security in Adolescents: Discordance in Self-Report and Parent-Proxy Report

ABSTRACT Food insecurity is associated with a multitude of negative outcomes among adolescents. Despite adolescents’ burgeoning autonomy, much of the research has relied on parent-proxy reports, with few studies directly comparing adolescents’ and parents’ perceptions of adolescent food security. In the present study, parent-adolescent dyads (N = 144) completed questionnaires measuring perceptions of adolescent food security. Adolescents (12–17 years) completed the Child Food Security Survey Module. Parents completed the Household Food Security Survey Module. Dyads demonstrated discordant perceptions of adolescent food security on categorical- and item-levels of analysis. Further research is needed to elucidate explanations for these discrepancies using longitudinal designs.

Quality of Life of Preschool-Age Children with Thalassemia Major

Introduction: Health problems caused by thalassemia disease process and treatment affect patients who suffer from this disease, including pediatric patients who are in their preschool age. These problems can interfere with the child's physical, emotional, social, and school functions. This study aimed to describe the quality of life of preschool-age children with thalassemia major in Sumedang and Garut areas. Methods: In this study, a quantitative descriptive design was applied to a sample of 63 parents of children with 3-6 years old children with thalassemia who were recruited using the total sampling approach. The quality of life as a variable was measured using the PedsQLTM 4.0 Generic Core Scales for parent-proxy reports. Data collected were then analyzed for the mean score and categorized into good or poor quality of life, which were then expressed in frequencies and percentages. Results: Results showed that the mean score of quality of life was 75.94, with the mean scores for physical function, emotional function, social function, and school function of 75.79, 71.98, 87.46, and 60.95, respectively. The majority of preschool-age children with thalassemia have poor quality of life. The dimension that receives the most negative influence is the school function. Conculusion: It is suggested that nurses can improve the quality of life of these children by identifying the impaired functions and providing the appropriate care, such as facilitating the needs of these children to receive blood transfusions in hospitals.

The Associations Among Physical Activity, Quality of Life, and Self-Concept in Children and Adolescents With Disabilities: A Moderated Mediation Model.

ObjectivesThis study aimed to examine a moderated mediation model of the associations among physical activity (PA), quality of life (QoL), and self-concept (SC) in children and adolescents with physical disabilities (PDs) and intellectual disabilities (IDs).Materials and MethodsA total of 288 children and adolescents with PDs and IDs, aged between 6 and 17 years, were recruited from 16 special schools in Hong Kong. PA, QoL, and SC were measured using the Physical Activity Questionnaire for Older Children (PAQ-C), Paediatric Quality of Life Inventory (PedsQL), and Physical Self-Description Questionnaire Short Form, respectively. Mediation (i.e., PA, QoL, and SC) and moderation analyses (i.e., age, sex, and parental education level) were conducted by structural equation modelling (SEM) using the M plus and PROCESS macro for SPSS.ResultsPhysical activity (PA) was positively associated with SC (PDs: β = 0.373; IDs: β = 0.343), and SC significantly mediated the associations between PA and QoL in children and adolescents with PDs (parent proxy-report QoL: β = 0.114; self-report QoL: β = 0.141) and IDs (self-report QoL: β = 0.204). The mediating effects of SC accounted for 16 and 15% of the total effects of PA on QoL (parent proxy-report and self-report) respectively, in participants with PDs, and 8 and 4%, respectively, in those with IDs. Males and participants with higher parental education levels reported stronger associations among PA, QoL, and SC than their counterparts.ConclusionThis study supports mediating and moderating effects on the associations among PA, QoL, and SC in children and adolescents with PDs and IDs. Future researchers should consider PA intervention in mental health services and provide tailor-made PA programmes based on personal and environmental factors for children and adolescents with disabilities.

Associations of Executive Function With Diabetes Management and Glycemic Control in Adolescents With Type 1 Diabetes.

The aims of this study were to assess domains of executive function in relation to diabetes management and glycemic control in adolescents with type 1 diabetes and to compare adolescent self-report and parent proxy-report of adolescent executive function. Adolescents with type 1 diabetes (N = 169, 46% female, age 15.9 ± 1.3 years) and their parents completed self-report and parent proxy-report versions of the Behavior Rating Inventory of Executive Function (BRIEF). Self-report and parent proxy-report BRIEF T scores were moderately to strongly correlated; parent proxy scores were significantly higher than self-report scores. Executive function problems (Global Executive Composite T score ≥60) occurred in 9% of adolescents by self-report and 26% by parent proxy-report. For almost all Metacognition Index scales, elevated (T score ≥60) parent proxy scores were associated with lower adherence, lower adolescent diabetes self-efficacy, and more parent involvement in diabetes management. Elevated scores on several Metacognition Index scales were associated with less pump use (Plan/Organize by self-report, Initiate by parent proxy-report, and Monitor by parent proxy-report) and higher A1C (Plan/Organize by self-report and parent proxy-report and Organization of Materials by parent proxy-report). The only significant associations for the Behavioral Regulation Index scales occurred for adherence (by parent proxy-report) and diabetes self-efficacy (by self-report and parent-report). Adolescents with type 1 diabetes who have problems with metacognition may need additional support for diabetes self-management.

Quality of life of children with mucopolysaccharidoses on the background of enzyme replacement therapy

Introduction. Mucopolysaccharidoses (MPSs) represent a group of rare lysosomal storage diseases, associated with the decline in life expectancy and impairing it’s quality. Despite prolonged evaluation of the effectiveness of pathogenic therapy, patient-reported outcomes are poorly defined. The aim of the study. To describe the impact of enzyme-replacement therapy (ERT) on the quality of life in MPS children, using parent-completed validated questionnaires. Materials and methods. Parents of forty five MPSs children (27 - with neuronopathic disease, 18- with non-neuronopathic disease, 31 among them were treated with ERT) completed parent proxy-report of Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scales. Parents of seventeen children (10 - with neuronopathic disease), treated with ERT, completed PedsQL™ 4.0 Generic Core Scales twice, parents of 7 children with non-neuronopathic disease, treated with ERT, completed Childhood Health Assessment Questionnare (CHAQ) and visual analogue scale (VAS) of pain and overall health status, parents of 10 children with neuronopathic disease, treated with ERT, completed VAS of pain and overall health status twice. Cross-sectional and dynamic analyses have been undertaken. Results. Stabilization and lack of significant improvement of functional disability, quality of life and VAS scores of pain and overall health status have been demonstrated. In 57% of patients with non-neuronopathic disease, treated with ERT, mean score of «School Functioning» decreased, in 80% of patients with neuronopathic disease, treated with ERT, mean score of «Physical Functioning» decreased. In 50% of children with neuronopathic disease and in 57% of children with non-neuronopathic disease, mean score of «Emotional Functioning» improved. Conclusion. MPS children, treated with ERT, require additional psychological and educational help, as well as regular motor rehabilitation.

Quality of life, illness perceptions, and parental lived experiences in TANGO2-related metabolic encephalopathy and arrhythmias.

TANGO2 disorder is a rare genetic disease with multi-system effects that causes episodic crises. Quality of life and psychosocial effects of this rare disease have not previously been studied. To examine health-related quality of life (HRQoL), illness perceptions, and lived experience, we surveyed 16 children and 31 parents of children with TANGO2 disorder identified via a disease-specific social media group and research foundation email distribution list. We assessed HRQoL by parent proxy-report and child self-report using the Pediatric Quality of Life Inventory (PedsQL™). Parental perceptions of their child's condition were assessed using the revised illness perceptions questionnaire adapted for TANGO2 disorder (IPQ-R-TANGO2). To collect qualitative data on parents' lived experience, we used novel open-ended survey questions. Parent proxy-reported (n = 29) physical (78.4 (21)) and psychosocial health (73.4 (12.8)) were highest among toddlers with TANGO2 disorder. Parent proxy-reported physical health was lowest in young adults (34.4 (35.4)), and psychosocial health was lowest in teens (40.8 (10.8)). When compared to previously published PedsQL™ scores in healthy children, parent-proxy reported summary and scale scores for TANGO2 patients were significantly lower (all p < 0.001). Parents' IPQ-R-TANGO2 responses (n = 26) suggested that parents perceived significant negative consequences of the disease. Parents'open-ended survey responses (n = 21) highlighted that they derived support from the TANGO2 community. This study characterizes HRQoL in patients with TANGO2 disorder across a range of ages, identifies potential targets for HRQoL improvement, and provides valuable insight into the psychosocial effects of TANGO2 disorder on patients and their families.

A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL). Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning. Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.

QOL-05. Cardiorespiratory fitness and health-related quality of life amongst survivors of childhood central nervous system tumours.

INTRODUCTION: Due to recent advancements in surgical techniques, imaging and adjuvant therapies, survival rates for children with central nervous system (CNS) tumours have improved. Research priorities have now shifted to focus on late-effects and quality of survivorship amongst childhood CNS tumour survivors. Our study aimed to assess levels of cardiorespiratory fitness and health-related quality of life (HRQoL) amongst survivors of childhood CNS tumours. A secondary aim was to investigate potential relationships between cardiorespiratory fitness and HRQoL. METHODS: Participants were recruited from the National Children’s Cancer Service in CHI Crumlin. Inclusion criteria included: diagnosis of a primary CNS tumour, aged between 6-17 years, between 3 months and 5 years post completion of oncology treatment, independent mobility, 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, both self-report and parent proxy report forms were used. RESULTS: 20 participants (n=9 male) were recruited with a mean age of 12.34 (SD = 3.46) years. Mean time since completion of oncology treatment was 2.31 (SD = 1.38) years. Mean 6-minute walk distance (6MWD) was 482.75 (SD = 50.04) metres, equating to the 5.55th (SD = 6.83th) percentile overall. 6MWD was significantly reduced compared to predicted 6MWD (t = -12.52, p <.001, 95% CI [-163.52, -116.68]). Parent proxy-reported HRQoL was significantly reduced compared to healthy population norms (t = -5.82, p <0.001, 95% CI [-25.76, -12.17]). A strong positive correlation exists between 6MWD and both parent-proxy (Pearson’s r = 0.533, p = 0.015) and child-reported HRQoL (r = 0.580, p = 0.007). CONCLUSION: Survivors of childhood CNS tumours present with impaired levels of cardiorespiratory fitness and HRQoL compared to healthy population norms. Higher levels of cardiorespiratory fitness are associated with higher levels of HRQoL.

SWK-07. Family mental health screening early after a diagnosis of pediatric brain tumor

INTRODUCTION: A new diagnosis of a brain tumor in a child has significant emotional consequences for every member of the family. Nevertheless, early phases of oncologic care rarely provide formal mental health screening. METHODS: We implemented a mental health screening protocol for families and patients with a newly diagnosed brain tumor admitted to our pediatric intensive care unit (PICU) at the time of diagnosis. Screening instruments were selected based on their previous validation and relevance to both a brain tumor diagnosis and PICU admission. Parents were contacted by a member of our team within 2 weeks of their child’s diagnosis, and completed the screening independently within the next 2 weeks via an online interface. Parent proxy reports for the children were used when necessary. Scores were shared with the family and neuro-oncology team. When indicated, supportive counseling was offered. RESULTS: Eighteen patients have met criteria for mental health screening. Of these, 8 patient and parent dyads have completed the screening (mean patient age 8.6 years; 75% white; 50% female). Of the families that completed the evaluation, most parents (62.5%) reported that their child’s diagnosis negatively impacted their health-related quality of life (HRQL), while 87.5% of children themselves reported a lower HRQL. Most children (66.7%) self-reported having symptoms outside of normal range for anger, anxiety and depression and 100% had scores outside of normal range for pain interference with their daily lives. Only half of eligible families accepted referrals for new mental health support. CONCLUSION: Both children with a new diagnosis of brain tumor and their parents are at risk for impaired mental health and quality of life early after diagnosis. A systematic approach to these concerns at the time of diagnosis may be helpful.

1004-P: Executive Dysfunction Predicts Lower Self-Care Readiness in Teens with Type 1 Diabetes

Aim: Management of type 1 diabetes (T1D) is a complex multi-step process in which executive function (EF) skills (planning, organization, problem solving) are critical for optimal control. In teens with T1D, EF may be important in transitioning from parent-supervised care to self-care. Methods: In an 18-month study, teens aged 13-17 years with T1D and parents completed the Diabetes Family Responsibility Questionnaire (DFR) and Readiness for Independent Self-Care Questionnaire (RISQ) every 6 months. Teen EF was assessed by parent proxy-report using Behavior Rating Inventory of Executive Function (BRIEF) . T-score ≥60 defined risk of executive dysfunction for the Global EF Composite (GEC) , Behavioral Regulation Index (BRI) and Metacognition Index (MI) . EF, demographic, and T1D treatment variables were used to predict change in RISQ over time using longitudinal mixed models with false discovery rate adjustment. Results: 169 teens (54% male) participated with baseline age 15.9±1.3 years, T1D duration 8.4±3.7 years, HbA1c 8.6±1.2%, 74.6% insulin pump use, and 21.3% continuous glucose monitor (CGM) use. 31.4% of teens had a parent-reported GEC score ≥60. After adjusting for age, gender, and parent-reported DFR (pDFR) , those with GEC ≥60 had parent-reported RISQ (pRISQ) 4.1 points lower than those with GEC &amp;lt;60, p=0.016. BRI (adjusted for age, CGM use, pDFR, and HbA1c) did not predict change in pRISQ while MI (adjusted for age, gender, and pDFR) did; those with MI ≥60 had pRISQ 5.3 points lower than those with MI &amp;lt;60, p&amp;lt;0.001. In models using teen-reported DFR and RISQ (tRISQ) , GEC and MI similarly predicted lower tRISQ. In all models, lower age (p&amp;lt;0.05) and greater parent involvement (p&amp;lt;0.001) also predicted lower RISQ. Conclusion: EF, especially metacognition, appears important for acquisition of self-care behaviors for teens with T1D. Evaluating EF during adolescence may identify teens with executive dysfunction who may need extra support during the transition process. Disclosure R.J.Vitale: None. L.J.Tinsley: None. L.K.Volkening: None. L.M.Laffel: Advisory Panel; Medtronic, Roche Diabetes Care, Consultant; Boehringer Ingelheim International GmbH, Dexcom, Inc., Dompé, Insulet Corporation, Janssen Pharmaceuticals, Inc., Lilly Diabetes, Novo Nordisk, Provention Bio, Inc. Funding NIH T32DK007529NIH P30DK036836NIH R01DK095273JDRF 2-SRA-2014-253-M-B

Development and Evaluation of Pediatric Versions of the Vanderbilt Fatigue Scale for Children With Hearing Loss.

Growing evidence suggests that fatigue associated with listening difficulties is particularly problematic for children with hearing loss (CHL). However, sensitive, reliable, and valid measures of listening-related fatigue do not exist. To address this gap, this article describes the development, psychometric evaluation, and preliminary validation of a suite of scales designed to assess listening-related fatigue in CHL: the pediatric versions of the Vanderbilt Fatigue Scale (VFS-Peds). Test development employed best practices, including operationalizing the construct of listening-related fatigue from the perspective of target respondents (i.e., children, their parents, and teachers). Test items were developed based on input from these groups. Dimensionality was evaluated using exploratory factor analyses (EFAs). Item response theory (IRT) and differential item functioning (DIF) analyses were used to identify high-quality items, which were further evaluated and refined to create the final versions of the VFS-Peds. The VFS-Peds is appropriate for use with children aged 6-17 years and consists of child self-report (VFS-C), parent proxy-report (VFS-P), and teacher proxy-report (VFS-T) scales. EFA of child self-report and teacher proxy data suggested that listening-related fatigue was unidimensional in nature. In contrast, parent data suggested a multidimensional construct, composed of mental (cognitive, social, and emotional) and physical domains. IRT analyses suggested that items were of good quality, with high information and good discriminability. DIF analyses revealed the scales provided a comparable measure of fatigue regardless of the child's gender, age, or hearing status. Test information was acceptable over a wide range of fatigue severities and all scales yielded acceptable reliability and validity. This article describes the development, psychometric evaluation, and validation of the VFS-Peds. Results suggest that the VFS-Peds provide a sensitive, reliable, and valid measure of listening-related fatigue in children that may be appropriate for clinical use. Such scales could be used to identify those children most affected by listening-related fatigue, and given their apparent sensitivity, the scales may also be useful for examining the effectiveness of potential interventions targeting listening-related fatigue in children. https://doi.org/10.23641/asha.19836154.

Translation and Validation of Urdu Version of Pediatric Quality of Life Inventory Generic Core Scale for Neoplase Children

Aim: To Translate and validate the Urdu version the Pediatric Quality of Life Inventory Generic Core Scale among neoplase children. Methods: The descriptive cross-cultural linguistic validation study in which PedsQL Generic core scale was conducted by following Bombardier, Beaton and Guillemin’s guidelines for cross cultural adaptation. The study was conducted in different phases i.e. translation and validation. The original English version of PedsQL was translated into Urdu by two individuals, one with an Urdu background and the other from a medical background, during the translation phase (T1, T2) (Forward translation). The T3, T4 Versions were then developed by two independent translators (one with an English background and the other with a medical background). The T1, T2, T3, and T4 versions were compared to the original English version and evaluated by a group of multilingual specialists, resulting in the T5-urdu version. Twenty pediatric rehab professionals were given the T5-urdu version to validate. Results: Chronbach’s alpha value of PedsQL of both child and parent reported after translation were 0.986 and 0.987 respectively and after testing on population were 0.956 and 0.910 respectively. P-values showed significant results which are &lt;0.05 in all domains. The inter domain correlations of child and parent reports after translation and testing on population were &gt;0.70 that interpreted good Pearson correlation. The interclass coeffieneint was ranged from 0.541-0.982. Conclusion: The Urdu version of PedsQL Generic Core Scale of Age 8-12 years both child and parent proxy report is valid for neoplase children. Keywords: Children, Health Related Quality of Life, Neoplase, Pediatric Quality of Life Inventory, Translation, Validation.

Addressing the Need for Better Measures of Positive Health.

Addressing the Need for Better Measures of Positive Health.