PedsQL Subscales Research Articles

Quality of Life Measures in Young Pre-Professional Dancers Compared to Non-Athletes and Non-Dancer Athletes.

Aim: To investigate quality of life (QoL) measures in a cohort of young female dancers. Methods: Cross-sectional survey study design was utilized to study dancers 8 to 17 years enrolled in two elite dance schools in the Boston area. The main outcome measure was the Pediatric Quality of Life (PedsQL 4.0) questionnaire, a validated QoL survey for children, with established normative values for comparison. Demographics and questions pertaining to training regimens and injury/illness history were also included. Sub-groups (8-11 years, 12-14 years, and 15-17 years) were created to analyze outcomes by age. Results: One hundred and forty emails were delivered, 72 were completed and included in the final data analysis (51.4%). The median scores for physical, psychosocial, emotional, social, and school PedsQL sub-scales were 87.5, 90.0, 80.0, 100.0, and 92.5, respectively. The median score of the total PedsQL scores was 88.8. No difference in QoL outcomes by age group was found (physical: P = .328; psychosocial: P = .918; emotional: P = .673; social: P = .573; school: P = 0.962; total: P = 0.766). 52.5% of the participants responded that they regularly perform in shows. Median hours/week of dance rehearsal was 10 hours (mean ± standard deviation: 10.3 ± 4.9; 95% CI: 9.0, 11.6; IQR: 7.0, 13.5; range: 2.0, 20.0) and 68.9% reported they practice and rehearse throughout the entire calendar year as opposed to solely during the school year; most dancers reported participating in dance 11 months (median value) per year (mean ± standard deviation: 10.7 ± 0.8; 95% CI: 10.5, 11.0; IQR: 10.0, 11.0; range: 9.0, 12.0). Conclusion: QoL measures for young female dancers were higher relative to existing data for the general population and lower compared to other sports participation. These results will support the social, emotional, and physical health of young dancers.

Comparisons of EQ-5D-Y and PedsQL in pediatric patients with mild-to-moderate chronic kidney disease in longitudinal analyses

ObjectiveTo characterize longitudinal changes and correlations between the measures of EQ-5D-Y and generic PedsQL and their associations with clinical changes in children and adolescents with mild-to-moderate chronic kidney disease (CKD).MethodsParticipants were recruited from January 2017 to September 2021 in a medical center in Taiwan. Both instruments were administered in their initial visits and every 6-month subsequent visits. Spearman’s Rho (ρ) was used to assess correlations between the scores of EQ-5D-Y and PedsQL measures in longitudinal changes. Cohen’s effect size (ES) was used to evaluate the changes of scores/subscales over time. In addition, factors associated with longitudinal changes in the score/subscales were explored.ResultsA total of 121 participants were enrolled, and 83 with ≥ 3 HRQOL measures during the 3.5 years follow-up were assessed their changes of HRQOL measures. The correlations (ρ > 0.3) appeared between the changes in the visual analog scale (VAS) of EQ-5D-Y and emotional and social subscales of PedsQL. ES was small (< 0.5) in the VAS and level-sum-score (LSS) of EQ-5D-Y scores for the clinical changes in comorbidities, while some PedsQL subscales were medium to high (0.5–0.8 or > 0.8). Hypertension, mineral bone disorder/anemia, and hyperuricemia associated with the changes in both HRQOL scores were varied by their various domains.ConclusionBoth EQ-5D-Y and PedsQL of HRQOL measures were responsive to worsened childhood CKD-related comorbidities during the follow-up; however, convergent validity between them was limited in some domains. The LSS of EQ-5D-Y showed greater changes than the VAS by comorbidity status; further comparison with utility weight is needed to determine the better performance of EQ-5D-Y.

Health-related quality of life of children with neurofibromatosis type 1: Analysis of proxy-rated PedsQL and CHQ questionnaires

This study aims to (1) investigate health-related quality of life (HRQoL) in children with Neurofibromatosis Type 1 (NF1) using the Pediatric Quality of Life inventory (PedsQL) and the Child Health Questionnaire (CHQ); and (2) compare the psychometric properties and content of these questionnaires in NF1 patients. PedsQL and CHQ proxy-reports were administered to parents/caregivers of 160 patients with NF1 aged 5-12 years. HRQoL scores were compared with Dutch population norms using independent t-tests. Psychometric properties (feasibility and reliability) were assessed by floor/ceiling effects and Cronbach's alpha coefficient. A principal component analysis (PCA) with varimax rotation was performed to identify the data's internal structure. By content mapping, we identified unique constructs of each questionnaire. Proxy-reported HRQoL was significantly lower on all PedsQL subscales for children aged 5-7 years, and on 4/6 subscales for children aged 8-12 years compared to norms. Significantly lower HRQoL was reported on 6/14 CHQ subscales (children 5-7 years) and 9/14 subscales (children 8-12 years). The PedsQL showed slightly better feasibility and reliability. The PCA identified two components, representing psychosocial and physical aspects of HRQoL, explaining 63% of total variance. Both questionnaires showed relevant loadings on both components. The CHQ subscales concerning parents and family were considered unique contributions. Proxy-reported HRQoL of children with NF1 is significantly lower compared to norms on multiple domains. Both questionnaires adequately measure HRQoL in children with NF1. However, the PedsQL has slightly better psychometric properties, while the CHQ covers a unique dimension of HRQoL associated with disease impact on parents and family.

Late Effects in Pediatric Allogeneic Hematopoietic Stem Cell Transplantation for Nonmalignant Diseases: Proxy- and Patient-Reported Outcomes

Survival rates in pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases have improved due to advances in conditioning regimens, donor selection, and prophylaxis and treatment of infections and graft-versus-host disease. Insight into the long-term patient-reported outcomes (PROs) after pediatric HSCT for nonmalignant disease is lacking but essential for optimal shared decision making, counseling, and quality of care. The purpose of this research was to determine long-term patient-reported outcomes in allogeneic pediatric HSCT for nonmalignant diseases and to compare these results with Dutch reference data. This single-center cohort study evaluated PROs (PedsQL 4.0, PROMIS item banks), self- or proxy-reported, among patients at ≥2 years after pediatric allogeneic HSCT for nonmalignant disease. Mean scores were compared with those of the Dutch general population. Of 171 eligible patients, 119 participated, for a 70% response rate. The median patient age was 15.8 years (range, 2 to 49 years), and the median duration of follow-up was 8.7 years (range, 2 to 34 years). Indications for HSCT included inborn errors of immunity (n=41), hemoglobinopathies (n=37), and bone marrow failure (n=41). Compared with reference data, significantly lower scores were found in adolescents (age 13 to 17 years) on the Total, Physical Health, and School Functioning PedsQL subscales. Significantly more Sleep Disturbance was reported in children (age 8 to 18 years). On the other hand, significantly better scores were seen on PROMIS Fatigue (age 5 to 7 years) and Pain Interference (age 8 to 18 years) and, in adults (age 19 to 30 years), on Depressive Symptoms and Sleep Disturbance. This study showed better or comparable very long-term PROs in patients after pediatric HSCT for nonmalignant diseases compared with the reference population. Children and adolescents seem to be the most affected, indicating the need for supportive care to prevent impaired quality of life and, more importantly, to amplify their long-term well-being.

Perceptions of Symptom Duration are Associated With Emotional Distress and Functioning in Adolescents With Protracted Concussion Recovery.

To evaluate perceptions about recovery duration (e.g., "my symptoms will last a long time", "my symptoms will be permanent rather than temporary") and its associations with emotional distress and functioning in children and adolescents with a slower post-concussive recovery. Participants (N = 49, 69% girls, 11-17 years old, M = 15.8 years old, SD = 1.8) were recruited from a concussion clinic on average 7.7 months after injury (SD = 2.5). Measures included the Illness Perception Questionnaire Revised (perceived duration of symptoms only) to evaluate recovery expectations, the Health and Behavior Inventory (self and parent reports) to evaluate current post-concussive symptoms (cognitive and somatic symptoms), the emotional distress subscale of the Strengths and Difficulties Questionnaire (SDQ-self-report), and the emotional functioning subscale of the Pediatric Quality of Life Questionnaire (PedsQL-self-report). Regression analyses (linear models with all covariates entered at once) suggested that greater expectations for symptom persistence were significantly associated with higher emotional distress on both SDQ and PedsQL subscales, after controlling for post-concussive symptom severity and other confounds. Emotional distress/functioning was not associated with perceptions of symptom duration reported by parents, severity of post-concussive symptoms (self- and parent reports), age, number of concussions, time since injury, or a history of mental health concern or diagnosis (parent-reported). This study suggests that pessimistic attitudes for recovery duration may be more strongly associated with emotional distress than current post-concussive symptom severity or a history of mental health concern or diagnosis.

Investigation of quality of life in obese adolescents: the effect of psychiatric symptoms of obese adolescent and/or mother on quality of life.

The present study assessed the obese adolescents' health-related quality of life (HRQoL) based on both adolescent-reported and maternal-reported questionnaires to clarify adolescent-related psychiatric factors, maternal psychiatric factors, and body mass index (BMI) percentile variables that independently affect the quality of life (QoL). A total of 190 adolescents (120 females and 70 males) were included in the study. The impact of clinical and psychiatric factors on the Pediatric Quality of Life Inventory-Child Version (PedsQL-C) scores was analyzed using hierarchical linear regression methods. The final models showed that only the Revised Child Anxiety and Depression Scale-Child Version major depressive disorder scores negatively predicted the physical, psychosocial, and total health scores of the PedsQL-C. The psychosocial scores of the PedsQL-P were negatively predicted by the Strengths and Difficulties Questionnaire emotional, and Conners' Parent Rating Scale-Revised-Short Form (CPRS-R-S) attention-deficit/hyperactivity disorder (ADHD) index scores. The PedsQL-P total scores were negatively predicted by the CPRS-R-S ADHD index scores. The findings of this study indicate that the adolescents' psychiatric symptoms and BMI percentile played a significant role in the PedsQL subscale functioning of obese adolescents compared to maternal psychiatric symptoms.

Convergent Validity of Myheartsmap: A Pediatric Psychosocial Health Screening Tool.

Recognition of pediatric mental health concerns often depends on assessment by parents, educators, and primary care professionals. Therefore, a psychosocial screening instrument suitable for routine use in schools and primary care is needed. The Pediatric Quality of Life (PedsQL) and the Strengths and Difficulties Questionnaire (SDQ) are widely used for screening but lack adolescent-specific mental health measures. MyHEARTSMAP is an instrument assessing aspects of youth psychosocial health via four domains: Psychiatry, Function, Social, and Youth Health. We evaluated MyHEARTSMAP convergent validity with PedsQL and SDQ among 122 child-parent dyads participating in a larger concussion study. Convergent validity was assessed via correlations: MyHEARTSMAP Psychiatry and Function domains correlated strongly (r ≥ 0.44) and Social domain correlated weakly (r ≤ 0.25) to corresponding PedsQL and SDQ subscales, while Youth Health domain correlated moderately (r ≥ 0.31) to the tools' total scales. In conclusion, MyHEARTSMAP converges with PedsQL and SDQ, and benefits from the inclusion of adolescent-specific psychosocial measures.

The Comparison of Pediatric Quality Of Life in 8 - 12-Year-Old Asthmatic Children Versus Healthy Controls

Background: Asthma is identified as the most prevalent chronic non-communicable childhood illness at any age worldwide, mainly affecting health, functioning, and pediatric quality of life (PedsQL) dimensions in children. Objectives: The current study aimed to evaluate the status of the PedsQL in asthmatic children versus healthy controls for the ultimate goal of developing childhood asthma community-based integrated preventive and management programs. Methods: This analytic cross‐sectional study was carried out on 96 children participants with asthma and 95 healthy children, aged eight to twelve years, from January to December 2019. The different aspects of quality of life (QoL) and demographic characteristics of all subjects with the same age and gender were examined using the standardized disease-specific PedsQL questionnaire (consisting of 23 items) and the personal information questionnaire, respectively. The P &lt; 0.05 criterion was set as the significance threshold. Results: The outcomes of patients’ responses associated with the PedsQL subscale showed significantly lower mean scores in children with controlled asthma compared to healthy children (P &lt; 0.001). This model covered physical, emotional (significantly lower mean scores), psychological, and social effects in addition to school functions, showing statistically significant differences between the two groups (P &lt; 0.001). In contrast to physical and school-related activities, lesser social status, emotional characteristics, and an overall score of QoL were significantly associated with poor QoL in lower-income children (P &lt; 0.001). No significant difference was found between the two groups regarding sex, maternal educational level, or family income, but the two groups were significantly different in terms of paternal educational level and smoking (P &lt; 0.05). Conclusions: It was found that asthma had profound unfavorable effects on patients’ healthy lifestyles and activities, mostly concerning daily physical activities, socio-emotional functioning, intellectual performance, school productivity, and psychological harmonization.

Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy

BackgroundThis study aims at determining the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) after the induction therapy, assessing the agreement between child self-reports and family proxy-reports HRQOL, and determining the factors related to this agreement, especially child age, family attendance, and children’s social relationships beyond the family.MethodsWe analyzed questionnaire data (2012–2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group’s clinical study (ALL-B12). Participants were children with B-cell precursor ALL aged 5–18 and their family members, who mostly took care of the child during hospitalization. Participants answered the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales (PedsQL-G), and Cancer Module (PedsQL-C) to measure pediatric HRQOL. We calculated the differences between child self-reported and family proxy-reported subscale scores along with intraclass correlation coefficients (ICC). We conducted multiple regression analyses according to all participant pairs and age groups (young children, school age, and adolescents), with ICCs for all PedsQL-G subscales (ICC-G) and all PedsQL-C subscales (ICC-C) as the outcome variables.ResultsFive hundred twenty-two pairs of children and their families were analyzed. We observed a moderate level of agreement on most PedsQL subscales between child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC = .32, 95% confidence interval = .24–.40). The agreement of ICC-C was positively related to family attendance in the hospitalization, only for the young children group (B = .185, p = .003).ConclusionsWe observed some differences between child self-reports and family proxy-reports of HRQOL of children with ALL. Both child self-reports and family proxy-reports captured HRQOL in the induction therapy. We suggest that attending to young children’s hospitalization affects the level of agreement between reports on their HRQOL.

120-OR: Diabetes-Related Quality of Life Assessment in Children following Total Pancreatectomy with Islet Autotransplantation

Total pancreatectomy with islet autotransplantation (TPIAT) can effectively improve pain and functional impairment associated with chronic pancreatitis (CP) in children. However, children undergoing this procedure usually develop post-pancreatectomy diabetes and require chronic insulin therapy. It can be difficult for providers and patients to conceptualize trading the symptoms of CP for the burden of diabetes. Therefore, we sought to evaluate diabetes-related quality of life (QOL) over time in children who underwent TPIAT, and compare QOL scores post-TPIAT with children who have type 1 diabetes (T1D). The Pediatric Quality of Life Inventory (PedsQL) 3.2 Diabetes Module was used to assess diabetes-related QOL. PedsQL scores were evaluated in 46 children (&amp;lt;20 years old) who underwent TPIAT and completed at least one survey. PedsQL data was collected at 3, 6, 9, 12, 18, and 24 months post-TPIAT. Total and Subscale scores were analyzed for change over time. The TPIAT cohort PedsQL scores at 24 months (n=16) were then compared to PedsQL scores from a historical cohort of demographically similar (age, race, sex) patients 24 months after new onset T1D (n=58). Mean age at TPIAT was 12.6 ± 4.7 years and 67% were female. Mean age at T1D diagnosis was 11.2 ± 3.2 years and 69% were female. The Diabetes Symptoms subscale (p=0.03) and the Total Score (p=0.049) decreased (worsened) over 24 months post-TPIAT (Diabetes subscale: median 68 to 56; Total Score: median 75 to 68). The other subscales did not significantly change over that time. At 24 months after diabetes onset, no PedsQL subscales were different between the TPIAT cohort and T1D cohort (all p&amp;gt;0.2). The Total PedsQL score, mostly attributable to the Diabetes Symptoms subscale, decreased over time in patients who underwent TPIAT. Additionally, diabetes-related QOL at 24 months was not significantly different from children with T1D. This data may be used to help counsel families who are considering TPIAT for treatment of CP. Disclosure J.M. Redel: None. L. Hornung: None. D.A. Elder: None. J.D. Nathan: None. M. Abu-El-Haija: None. Funding Cincinnati Children’s Hospital

A longitudinal analysis of the effect of anemia on health-related quality of life in children with mild-to-moderate chronic kidney disease.

To evaluate impact of anemia on health-related quality of life (HRQOL) over time in a large pediatric cohort with mild-to-moderate chronic kidney disease (CKD). Participants were enrolled in the Chronic Kidney Disease in Children Study (CKiD), a multicenter, longitudinal cohort. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL). Anemia was defined as hemoglobin < 5th percentile for age, sex, and race. Two longitudinal analyses were conducted on consecutive visit pairs. Models examined effects of anemia status on both HRQOL score over time and change in HRQOL score between consecutive visits. The sample included 733 children with a median estimated GFR 54ml/min/1.73m2. Thirty percent of children had anemia at index visit. Analysis of HRQOL scores revealed the presence of anemia was associated with significantly lower overall HRQOL (β = - 2.90 (95% CI = - 7.74, - 0.21), p = 0.04) and physical functioning (β = - 5.72 (- 9.49, - 2.25), p = 0.001) according to children. On parent ratings, the development of anemia was associated with lower emotional functioning scores (β = - 4.87 (- 8.72, - 0.11), p = 0.045). In the second model, children who developed anemia were rated by caregivers as having more decreased physical functioning than children who remained anemia-free (β = - 3.30 per year (- 5.83, - 0.76), p = 0.01). Caregivers did not observe declines in their children's other PedsQL subscales in the presence of developed anemia. Children with resolved or persistence did not show improvement or decline in any aspect of HRQOL functioning relative to non-anemic subjects. In children with CKD, anemia has an adverse effect on HRQOL which persists over time but does not appear to be progressive.

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC. Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years). Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains. Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

Health-related Quality of Life in Newly Diagnosed Pediatric Patients With Celiac Disease.

Celiac disease (CD) is a common chronic condition with potential adverse physical and psychosocial implications for affected children. The study purpose was to characterize health-related quality of life (HRQOL) in a large sample of pediatric patients with newly diagnosed CD using the PedsQL 4.0 Generic Core Scales, and compare it to that of healthy children and children with nonceliac gastrointestinal (GI) conditions using historic data. The PedsQL was administered to 159 children with newly diagnosed CD and their parents at either the time of diagnostic esophagogastroduodenoscopy or before their initial dietitian appointment for gluten-free diet teaching. Mean parent-report and self-report PedsQL summary and subscale scores were calculated, then compared to published means from a sample of healthy children and a sample of children with nonceliac GI symptoms using 1-sample t tests. Compared to the healthy children, those with newly diagnosed CD had lower Total Scores, Physical Health, Psychosocial Health, Emotional Functioning, and School Functioning on parent report (P < 0.008) with similar findings on self-report. Within the CD sample, clinically significant scores were found in 55.9% for School Functioning, 62.7% for Physical Health, 54.4% for Emotional Functioning, 43.7% for Social Functioning, and 49% for Total Score. Children and adolescents with newly diagnosed CD had lower HRQOL than healthy children and similar HRQOL to that of patients with nonceliac GI conditions. Patients with deficits in domains such as school or emotional functioning may benefit from early interventions including a Section 504 plan or meeting with a psychologist or social worker.

A preliminary investigation of the psychometric properties of PROMIS® scales in emerging adults with sickle cell disease.

To report preliminary psychometric properties of PROMIS® assessments among emerging adults with sickle cell disease (SCD). Forty-five emerging adults with SCD ages 18-24 (M = 20.81, SD = 1.73) completed PROMIS® Pain Interference and Fatigue short forms and the Pediatric Quality of Life Inventory (PedsQL). Chart review was used to obtain information regarding SCD complications and health care utilization in the 3 years prior to study enrollment. Multivariate path analysis was used to compare PROMIS® scores by disease severity and use of disease-modifying therapies. Cronbach's alpha was used to evaluate internal consistency, and Pearson correlations assessed convergent validity between PROMIS® measures and the PedsQL. Internal consistency was excellent for PROMIS® Pain Interference (α = .95) and good for PROMIS® Fatigue (α = .85). Associations between PROMIS® measures and PedsQL subscales were in the expected direction and large in magnitude (all ps < .001). There were no differences in PROMIS® scores based on disease severity or use of disease-modifying therapy (ps = .14-.86). Findings provide preliminary evidence of validity and reliability of the PROMIS® Pain Interference and Fatigue short forms among emerging adults with SCD. Additional research is needed to replicate these findings in larger samples and assess sensitivity to change over time. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

The Association Between Length of Recovery Following Sport-Related Concussion and Generic and Specific Health-Related Quality of Life in Adolescent Athletes: A Prospective, Longitudinal Study.

Our purpose was to determine the association between concussion recovery and health-related quality of life (HRQOL). Secondary school athletic training facilities. Patients (N = 122) with a concussion. Prospective, longitudinal cohort. The Pediatric Quality-of-Life Inventory (PedsQL), PedsQL Multidimensional Fatigue Scale (MFS), and Headache Impact Test-6 (HIT-6) were completed at preseason and days 3 (D3), 10 (D10), and 30 (D30) postconcussion. The independent variable was the recovery group. Interactions between group and time (P < .001) were noted for all PedsQL subscales, except Social Functioning (P = .75). Significantly lower scores were found among Prolonged than in Short on D3 (P < .05). Significant interactions (P < .001) were also noted for all MFS subscales. Pairwise comparisons for General and Sleep subscales revealed Prolonged had lower scores than Short and Moderate on D3 and D10. A group by time interaction was found for the HIT-6 (P < .001), with scores being higher (P < .01) in Prolonged than in Short on D3 and D10. Adolescents with a prolonged recovery demonstrated lower HRQOL in the immediate days postinjury, particularly in physical and school functioning, fatigue, and headache. There was a strong association between recovery length and school functioning. Additional research is needed to understand how to minimize the impact of concussion on HRQOL.

Family functioning and quality of life among children with anxiety disorder and healthy controls. A cross-sectional study.

Studies have shown that children with anxiety disorders (ADs) present impaired family functioning and quality of life. We aimed to evaluate family functioning and quality of life among children with AD and healthy controls. Cross-sectional study (survey) at two centers in Turkey. The study group comprised 42 children diagnosed with AD and 55 controls. The Screen for Child Anxiety-Related Emotional Disorders (SCARED) questionnaire was filled out by their parents to measure the severity of anxiety symptoms. Family functioning among the children was assessed using the Family Assessment Device (FAD) and Parental Attitude Research Instrument (PARI). The children's quality of life was assessed through the Pediatric Quality of Life Inventory (PedsQL). The children's average age was 10.00 ± 0.21 years in the AD group and 9.98 ± 1.53 years among the controls. There were higher scores on all FAD subscales in the AD group (2.15 ± 0.52; 2.29 ± 0.44; 2.44 ± 0.55; 2.10 ± 0.61; 2.56 ± 0.40; 2.32 ± 0.33; and 2.29 ± 0.47). On PARI subscales, there were significant differences favoring the AD group (p < 0.05), except for democratic attitude. All PedsQL subscales differed significantly between the groups, favoring the AD group. A statistically significant relationship was found between all PedsQL subscales and SCARED scores in the AD group. We found that both family functioning and quality of life among children with AD were negatively affected. However, further studies with larger sample sizes are required to reach stronger conclusions.

Metabolic correlates of health-related quality of life among overweight and obese adolescents

BackgroundLittle is known about the metabolic factors associated with the health-related quality of life (HRQOL) among obese youths. The aim of this study is to assess metabolic correlates of HRQOL in a clinical sample of Taiwanese overweight and obese (OW/OB) adolescents.MethodsOW/OB adolescents (age 11–19 years) were recruited and compared to their normal-weight counterparts in a tertiary hospital. HRQOL was assessed by the Pediatric Quality of Life Inventory (PedsQL). Student t tests and Cohen’s d were used to compare the differences in the PedsQL scores between normal-weight and OW/OB participants who were stratified by their cumulative number of cardiometabolic risk factors (CRF). Pearson’s correlation and multivariate linear regression analyses were applied to identify predictors of PedsQL.ResultsOW/OB adolescents (n = 60) reported lower PedsQL scores than those of normal-weight peers. The negative effects were even larger in OW/OB participants with more than one CRF. Body mass index z-scores and serum alanine aminotransferase (ALT) levels were negatively correlated with overall and subscales of PedsQL (r = − 0.283 to − 0.431). Multivariate linear models showed ALT to be the most salient factor associated with poor obesity-related HRQOL.ConclusionTaiwanese OW/OB adolescents, particularly those having additional CRF, reported worse HRQOL. Impaired liver functions may predispose OW/OB subjects to even worse HRQOL.

Health Related Quality of Life and Weight Self-Efficacy of Life Style among Normal-Weight, Overweight and Obese Iranian Adolescents: A Case Control Study

Background: Identifying and investigating the factors influencing self-efficacy and eventually health related quality of life (HRQoL) can be an important step toward the prevention and treatment of the obesity. The aim of the study was to compare weight self-efficacy and HRQoL among normal-weight, overweight and obese Iranian adolescents. Materials and Methods In this case-control study, 118 obese and overweight adolescents (case group) and 118 adolescents with normal weight (control group) were recruited. Adolescent's anthropometric characteristics were measured. The Weight Efficacy Lifestyle Questionnaire (WEL), pediatric quality of life inventory (PedsQLTM 4.0) and self-reported physical activity were completed by the adolescents. Results: Multivariate logistic regression adjusting for various confounders indicated that overweight and obese adolescents were less likely to be physically active (adjusted odds ratio, AOR= 0.66; 95% confidence interval [CI], 0.48 to 0.911), had lower ability to cope with social pressure (AOR= 0.54; 95% CI, 0.32 to 0.93), involved in less positive activities (AOR= 0.53; 95% CI, 0.37 to 0.75), and felt more negative emotions (AOR= 0.23; 95% CI, 0.14 to 0.36) than their normal-weight counterparts. Moreover, obese and overweight adolescents were more likely to report deteriorated quality of life in all PedsQL subscales than those with normal weight P<0.05). The results of the mediation analysis indicated that negative emotions mediated the relationship between adolescents’ weight status and HRQoL (Z =-5.79, P<0.001). Conclusion: Weight management programs should focus on increasing adolescent’s control on situations related to negative emotions to improve their HRQoL.

Reference Values for the Pediatric Quality of Life Inventory and the Multidimensional Fatigue Scale in Adolescent Athletes by Sport and Sex

Background: Effective use of patient-rated outcome measures to facilitate optimal patient care requires an understanding of the reference values of these measures within the population of interest. Little is known about reference values for commonly used patient-rated outcome measures in adolescent athletes. Purpose: To determine reference values for the Pediatric Quality of Life Inventory (PedsQL) and the Multidimensional Fatigue Scale (MFS) in adolescent athletes by sport and sex. Study Design: Cross-sectional study; Level of evidence, 3. Methods: A convenience sample of interscholastic adolescent athletes from 9 sports was used. Participants completed the PedsQL and MFS during one testing session at the start of their sport season. Data were stratified by sport and sex. Dependent variables included the total PedsQL score and the 5 PedsQL subscale scores: physical functioning, psychosocial functioning, emotional functioning, social functioning, and school functioning. Dependent variables for the MFS included 3 subscale scores: general functioning, sleep functioning, and cognitive functioning. Summary statistics were reported for total and subscale scores by sport and sex. Results: Among 3574 males and 1329 female adolescent athletes, the PedsQL scores (100 possible points) generally indicated high levels of health regardless of sport played. Mean PedsQL total and subscales scores ranged from 82.6 to 95.7 for males and 83.9 to 95.2 for females. Mean MFS subscale scores (100 possible points) ranged from 74.2 to 90.9 for males and 72.8 to 87.4 for females. Conclusion: Healthy male and female adolescent athletes reported relatively high levels of health on the PedsQL subscales and total scores regardless of sport; no mean scores were lower than 82.6 points for males or 83.9 points for females. On the MFS, males and females tended to report low effect of general and cognitive fatigue regardless of sport; mean scores were higher than 83.5 points for males and 83.8 points for females. Clinically, athletes who score below the reference values for their sport have poorer health status than average adolescent athletes participating in that sport. Scores below reference values may warrant consideration of early intervention or treatment.

Patient-reported quality of life (QOL) following CTL019 in pediatric and young adult patients (pts) with relapsed/refractory (r/r) b-cell acute lymphoblastic leukemia (B-ALL).

10523 Background: The global ELIANA trial (NCT02435849) evaluates the efficacy and safety of CTL019, a single infusion of genetically modified autologous chimeric antigen receptor–expressing T cells targeting CD19+ cells in pediatric and young adult r/r B-ALL pts. Analyses show a complete response rate of 82% with or without complete blood count recovery ≤ 3 months. A serious adverse event rate of 71% was observed in ≤ 8 weeks of infusion, decreasing to 17% at &gt; 8 weeks (Grupp S, et al. Blood. 2016;128(22) [abstract 221].). This analysis further evaluates the clinical benefit of CTL019. QOL was assessed before and after CTL019 infusion. Methods: Infused pts were 3-23 y/o with CD19+ B-ALL who were chemo refractory, relapsed after allogeneic stem cell transplant (SCT), or otherwise ineligible for SCT. Pts ≥ 8 y completed the Pediatric Quality of Life Inventory (PedsQL) and EuroQol EQ-5D at baseline and following CTL019 infusion. Minimal clinically important differences are estimated to be 4.4 and 7 to 10 for PedsQL and EQ-5D, respectively. Results: 62 of 81 enrolled pts were infused; 56% had relapsed after SCT with median of 3 prior therapies. At interim analysis, 50 pts were treated ≥ 3 months prior to data cutoff and eligible for primary efficacy analysis. A total of 39 pts were ≥ 8 y. Mean PedsQL total and EQ-5D VAS scores, respectively, were 58.4 and 69.4 at baseline. Mean changes from baseline for the PedsQL total and EQ VAS scores, respectively, were 13.9 and 13.7 at month 3 and 12.8 and 10.9 at month 6, supporting clinically meaningful improvements in QOL. Similar trends were observed with each PedsQL subscale. With EQ-5D, the proportions of pts reporting problems with mobility, self-care, usual activities, anxiety/depression, or pain/discomfort were notably decreased at months 3 and 6 compared with baseline. Conclusions: Clinically meaningful improvements in QOL were observed at 3 and 6 months after CTL019 therapy in pediatric and young adult r/r B-ALL pts, including fewer problems in each EQ-5D domain. These results suggest improved QOL after this one-time immunocellular therapy beyond the period of acute toxicities. Clinical trial information: NCT02435849.