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Context/ObjectiveThe objective of the present study was to investigate the effects of pain severity, pain interference and social functioning in a serial multiple mediator model predicting school/work functioning in youth with spinal cord injury (SCI) from their perspective.DesignExplanatory or mechanistic study.SettingPediatric specialty hospital.Participants125 youth with SCI ages 8–24.Outcome MeasuresThe Pain Severity Item and Pain Interference Scale from the PedsQL™ Spinal Cord Injury Module, and the Social Functioning and School/Work Functioning Scales from the PedsQL™ 4.0 Generic Core Scales Short Form SF15 were completed.ResultsHierarchical multiple regression and serial multiple mediator model analyses were conducted to test the percent variability accounted for and the mediating effects of pain interference and social functioning in the association between pain severity and school/work functioning. Pain predictive effects on school/work functioning were serially mediated by pain interference and social functioning. In a predictive analytics model conducted with hierarchical multiple regression analysis, age, sex, pain, pain interference and social functioning accounted for 45% of the variance in youth-reported school/work functioning (P < 0.001), demonstrating a large effect size.ConclusionThe mechanisms of the predictive effects of pain severity on school/work functioning in youth with SCI are explained in part by the serial multiple mediator effects of pain interference and social functioning. Identifying the multiple mediators of SCI pain on school/work functioning from the perspective of youth with SCI may facilitate future clinical research and practice to ameliorate impaired daily functioning and improve overall well-being.

AbstractObjectives:The objective was to investigate the serial mediating effects of perceived cognitive functioning, patient health communication, and treatment anxiety in the relationship between heart disease symptoms and overall generic health-related quality of life in children with heart disease from the patient perspective.Methods:Heart Disease Symptoms, Cognitive Problems, Communication and Treatment Anxiety Scales from Pediatric Quality of Life Inventory™ (PedsQL™) Cardiac Module and PedsQL™ 4.0 Generic Core Scales were completed by 278 children with CHD ages 8–18. A serial multiple mediator model analysis was conducted to test the sequential mediating effects of perceived cognitive functioning, patient health communication, and treatment anxiety as intervening variables in the relationship between the heart disease symptoms predictor variable and overall generic health-related quality of life.Results:Heart disease symptoms predictive effects on overall generic health-related quality of life were serially mediated in part by cognitive functioning, patient health communication, and treatment anxiety. In a predictive analytics model with age and gender demographic covariates, heart disease symptoms, perceived cognitive functioning, patient health communication, and treatment anxiety accounted for 67% of the variance in patient-reported overall generic health-related quality of life (p < 0.001), representing a large effect size.Conclusions:Perceived cognitive functioning, patient health communication, and treatment anxiety explain in part the mechanism of heart disease symptoms predictive effects on overall generic health-related quality of life in paediatric heart disease. Identifying the mediators of heart disease symptoms on overall generic health-related quality of life from the patient perspective may inform targeted clinical interventions and future patient-centred clinical research to improve overall daily functioning.

The primary objective was to compare the patient-reported gastrointestinal symptoms profiles of pediatric patients with gastroparesis to pediatric patients with 1 of 7 other functional gastrointestinal disorders and organic gastrointestinal diseases using the Pediatric Quality of Life Inventory (PedsQL) Gastrointestinal Symptoms Scales. The gastrointestinal symptoms profiles of 64 pediatric patients with gastroparesis who manifested abnormal gastric retention based on gastric emptying scintigraphy testing were compared to 582 pediatric patients with 1 of 7 physician-diagnosed gastrointestinal disorders (functional abdominal pain, irritable bowel syndrome, functional dyspepsia, gastroesophageal reflux disease, functional constipation, Crohn disease, ulcerative colitis). The PedsQL Gastrointestinal Symptoms Scales encompass 10 individual multi-item scales which measure stomach pain, stomach discomfort when eating, food and drink limits, trouble swallowing, heartburn and reflux, nausea and vomiting, gas and bloating, constipation, blood in poop, and diarrhea/fecal incontinence, with an overall total gastrointestinal symptoms score. The gastrointestinal symptoms profile analysis identified significantly worse overall total gastrointestinal symptoms scores between pediatric patients with gastroparesis compared to all other gastrointestinal groups except for irritable bowel syndrome (most Ps < 0.001), with significant differences for stomach discomfort when eating compared to all 7 other gastrointestinal groups (most Ps < 0.001). Nausea and vomiting were significantly worse for gastroparesis compared to all other gastrointestinal groups except for functional dyspepsia (all Ps < 0.001). Pediatric patients with gastroparesis self-reported significantly worse overall total gastrointestinal symptoms compared to all other gastrointestinal diagnostic groups except for irritable bowel syndrome, with stomach discomfort when eating and nausea and vomiting symptoms exhibiting the greatest differences compared to most gastrointestinal diagnostic groups.

This study aims to describe the prevalence of gastrointestinal (GI) symptoms following the first time occurrence of acute pancreatitis (AP) and to measure the impact of the episode on patient health-related quality of life (HRQOL) from the perspectives of patients and parents. Questionnaires regarding GI symptoms 1 year following the initial occurrence of AP were obtained from 74 pediatric patients. Thirty of these patients completed both the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the PedsQL Gastrointestinal Symptoms and Worry Scales. These data were compared to legacy-matched healthy controls. Children with a standalone occurrence of AP experienced a similar rate of GI symptoms compared to those who progressed to acute recurrent pancreatitis (ARP) within 1 year. PedsQL 4.0 Generic Core Scales scores were significantly lower for children self-report and parent proxy-report for patients that experienced AP compared to healthy controls. AP patients also demonstrated significantly more symptoms than healthy controls in the Gastrointestinal Symptoms and Worry Scales across multiple domains. Gastrointestinal symptoms affect many children who experience a single AP event even without recurrent attacks. The burden of symptoms is not significantly different from those who develop ARP. This is a novel study that evaluates patient-reported outcomes in children following an AP attack and demonstrates there is a significant impact on HRQOL in children and family experiences post AP. More data are needed to study the progression of disease and the extended impact of AP following an initial AP attack in pediatric patients.

Study design: Preliminary explanatory or mechanistic cross-sectional study. Objectives: This preliminary cross-sectional study investigates the hypothesized serial mediating effects of bladder/bowel worry, social worry, and social participation in the relationship between bladder function or bowel function and emotional functioning in youth with spinal cord injury (SCI) from their perspective. Methods: The Bladder Function, Bowel Function, Worry Bladder Bowel, Worry Social, and Social Participation Scales from the PedsQL™ Spinal Cord Injury Module and the Emotional Functioning Scale from the PedsQL™ 4.0 Generic Core Scales Short Form SF15 were completed by 127 youth with SCI ages 8–24. Serial multiple mediator model analyses were conducted to test the hypothesized sequential mediating effects of bladder/bowel worry, social worry, and social participation as intervening variables separately for the cross-sectional association between bladder function or bowel function and emotional functioning. Results: The separate cross-sectional negative association of bladder function and bowel function with emotional functioning were serially mediated by bladder/bowel worry, social worry and social participation, accounting for 28% and 31%, respectively, of the variance in youth-reported emotional functioning (p&lt; 0.001), representing large effect sizes. Conclusions: In this preliminary study, bladder/bowel worry, social worry, and social participation explain in part the cross-sectional negative association of bladder function and bowel function with emotional functioning in youth with SCI from the youth perspective. Identifying the hypothesized associations of bladder function and bowel function, bladder/bowel worry, social worry, and social participation with emotional functioning may help inform future clinical research and practice for youth with SCI.

OBJECTIVE--The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents aged 2-18 years. The PedsQL 4.0 Generic [...]

While these disparities have been shown to exist across groups of both adults and children, continued and expanded focus on the primary care experiences of children is important (Forrest, Simpson, [...], Objective. To examine the effects of race/ethnicity, language, and potential access on parents' reports of pediatric primary care experiences. Data Sources/Study Setting. Primary survey data were collected (67 percent response rate) from 3,406 parents of students in kindergarten through sixth grade in a large urban school district in California during the 1999-2000 school year. Data Collection. The data were collected by mail, telephone, and in person. Surveys were administered in English, Spanish, Vietnamese, and Tagalog. Study Design. Data were analyzed using multiple regression models. The dependent variable was parents' reports of primary care quality, assessed via the previously validated Parents' Perceptions of Primary Care measure (P3C). The independent variables were race/ethnicity, language, and potential access to care (insurance status, presence of a regular provider of care), controlling for child age, gender, and chronic health condition status, and mother's education. Principal Findings. Parents' reports of primary care quality varied according to race/ ethnicity, with Asian and Latino parents reporting lower P3C scores than African Americans and whites. In multivariate analyses, both language and potential access exerted strong independent effects on primary care quality, reducing the effect of race/ ethnicity such that the coefficient for Latinos was no longer significant, and the coefficient for Asians was much smaller, though still statistically significant. Conclusions. To reduce racial/ethnic disparities in primary care, attention should be paid both to policies aimed at improving potential access and to providing linguistically appropriate services. Key Words. Health care quality, children, primary care, race and ethnicity, health disparities

Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. OBJECTIVE--The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed [...]

Children newly diagnosed with cancer have been documented to be at increased risk for difficulties in their return to school and ongoing positive social experiences. This article reviews the critical role of social support in helping children adjust to their illness and treatment. Social skills training for newly diagnosed children is presented as an important intervention strategy for increasing positive social interactions and overall psychosocial adjustment. A randomized, clinical research trial currently in progress that will evaluate the impact of social skills training on newly diagnosed children 5-13 years of age is delineated. The potentially positive impact of social skills training on the prevention of emotional problems and increased biologic survival are discussed. Cancer 1993; 71:3314-9.

Like adults, children suffer from gastroparesis; however, there are currently no validated instruments to determine the impact of gastroparesis in pediatric patients. The objective of this study was to develop the items and domains to support the content validity of the new Pediatric Quality of Life Inventory (PedsQL™) Gastroparesis Symptoms Module. Patients were recruited from the National Institute of Diabetes and Digestive and Kidney Diseases Pediatric Gastroparesis Registry. The qualitative methods involved an iterative process comprising a literature review of existing questionnaires and gastroparesis clinical research, an expert review panel of pediatric gastroenterologists who provided feedback on the conceptual framework in developing the semi-structured interview, and in-depth focus interviews with six pediatric patients with gastroparesis and five of their parents (one did not participate) in developing relevant domains and item content. In the subsequent cognitive interviews phase, five additional patients with gastroparesis and their parents provided detailed feedback on item content, relevance, importance, and understandability of the domains and items. Ten domains/scales were derived from the qualitative methods, with item content saturation achieved at 67 items, with no further themes or content identified during the final cognitive interviews. The Module is comprised of 10 individual scales measuring nausea, stomach fullness when eating, vomiting, dry heaves, heartburn and reflux, stomach pain and hurt, food and drink limits, bloating, appetite, and worry. Our study supports the content validity of the new PedsQL Gastroparesis Symptoms Module. The Module field test study will be conducted in a multisite national study.

Study design: It is a qualitative study. Objectives: To develop the items and support content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) Spinal Cord Injury Module for youth and emerging adults with spinal cord injury (SCI). Setting: Community and children’s hospital. Methods: A comprehensive literature review was conducted in pediatric and SCI-specific health-related quality-of-life (HRQoL) measures to create an item bank. A multidisciplinary panel of experts convened to discuss the conceptual framework of the module, reviewed the item bank, and generated a core set of items through a process of “binning-and-winnowing”. International clinicians and researchers participated in iterative rounds of a Modified Delphi survey, until 90% agreement was reached on all items of the core set, resulting in the construction of a preliminary module. Cognitive interviews were conducted on individuals with SCI and their parents to determine the relevance of items and age-appropriate wording of the preliminary module. The research team regularly reviewed transcriptions of the interviews, and incorporated participant feedback to modify the modules. This process was repeated until content saturation was achieved. Results: A total of 43 participants completed the cognitive interviews. Following five iterations of cognitive interviews and modifications based on participant input, the PedsQL™ SCI Module was generated. It comprised 67 items in the 12 domains of Daily Activities, Mobility, Bladder Function, Bowel Function, Muscle Spasms, Pressure Injury, Pain, Orthostatic Hypotension, Autonomic Dysreflexia, Participation, Worry, and Emotions. Conclusions: The PedsQL™ SCI Module was developed using well-established qualitative methods. Internet-based field testing is underway to finalize its development and validation.

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A study presents the formulation of graded response multilevel models (GRMM) using Bayesian estimation and Gibbs sampling methods. It illustrates the model by comparing estimates for some item parameters for the GRMM and ordinary graded response models.

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Type 1 DM (Insulin Dependent Diabetes Mellitus) was previously the only type of pediatric diabetes to receive attention in the literature; however, several studies have now documented the emerging problem [...]

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Patient-reported outcome (PRO) measures of gastrointestinal symptoms are recommended to determine treatment effects for irritable bowel syndrome (IBS) and functional abdominal pain (FAP). Study objectives were to compare the symptom profiles of pediatric patients with IBS or FAP with healthy controls and with each other using the PedsQL Gastrointestinal Symptoms and Gastrointestinal Worry Scales, and to establish clinical interpretability of PRO scale scores through identification of minimal important difference (MID) scores. Gastrointestinal Symptoms and Worry Scales were completed in a 9-site study by 154 pediatric patients and 161 parents (162 families; IBS n?=?46, FAP n?=?119). Gastrointestinal Symptoms Scales measuring stomach pain, stomach discomfort when eating, food and drink limits, trouble swallowing, heartburn and reflux, nausea and vomiting, gas and bloating, constipation, blood in poop, and diarrhea were administered along with Gastrointestinal Worry Scales. A matched sample of 447 families with healthy children completed the scales. Gastrointestinal Symptoms and Worry Scales distinguished between patients with IBS or FAP compared with healthy controls (P?1.50) for symptoms indicative of IBS or FAP, demonstrating a broad multidimensional gastrointestinal symptom profile and clinical interpretability with MID scores for individual PRO scales. Patients with IBS manifested more symptoms of constipation, gas and bloating, and diarrhea than patients with FAP. Patients with IBS or FAP manifested a broad gastrointestinal symptom profile compared with healthy controls with large differences, indicating the critical need for more effective interventions to bring patient functioning within the range of healthy functioning.

Health-related quality of life (HRQL) measures provide information about disease assessment; however, health care providers may be reluctant to use HRQL assessments as scores can be difficult to interpret. We sought to identify levels for impaired pain-related HRQL in children with sickle cell disease (SCD). Children (n=251) completed the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and PedsQL SCD Module in a multisite study. Using children’s item scores on the Pain and Hurt and Pain Impact scales of the PedsQL SCD Module, High, Intermediate, and Low Functioning groups were created. We compared functioning groups with the Pain and Hurt and Pain Impact scale scores to determine levels representing high and low HRQL. These scores were compared with disease severity and the PedsQL Generic Core Scales. Scores of ≤60 on the PedsQL SCD Pain and Hurt and Pain Impact scales were associated with severe disease and met requirements for impaired functioning on the PedsQL Generic Core Scales. Scores of ≥81 on the Pain and Hurt and the Pain Impact scales can be considered consistent with good HRQL in those domains in SCD. Alternately, scores of ≤60 are cause for concern and suggest areas of HRQL impairment in SCD.

Pediatric acute liver failure (PALF) is a rare but serious event, with poorly understood functional outcomes. The goal was to determine the prevalence of reduced neuropsychological functioning and health-related quality of life (HRQOL) following PALF.

IMPORTANCE: Validated patient-reported outcomes responsive to clinical change are needed to evaluate the effectiveness of quality improvement interventions. OBJECTIVES: To evaluate responsiveness, construct validity, and predictive validity of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales in the pediatric inpatient setting. DESIGN, SETTING, AND PARTICIPANTS: Prospective, cohort study of parents and caregivers of patients 1 month to 18 years old (n = 4637) and patients 13 to 18 years old (n = 359) admitted to Seattle Children’s Hospital between October 1, 2011, and December 31, 2013. Of 7184 eligible participants invited to complete the survey, 4637 (64.5%) completed the PedsQL on admission, and of these 2694 (58.1%) completed the follow-up survey 2 to 8 weeks after discharge. MAIN OUTCOMES AND MEASURES: Responsiveness was assessed by calculating improvement scores (difference between follow-up and admission scores). Construct validity was examined by comparing the mean improvement scores for known groups differing by medical complexity. Predictive validity was assessed using Poisson regression to examine associations among admission scores, prolonged length of stay (≥3 days), and 30-day readmissions or emergency department (ED) return visits. Similar models examined the association between improvement scores and risk for 30-day readmissions or ED return visits. RESULTS: The mean (SD) PedsQL improvement scores (scale, 0-100) were 22.1 (22.7) for total, 29.4 (32.4) for physical, and 17.1 (21.0) for psychosocial. The mean PedsQL total improvement scores were lower for patients with medically complex conditions compared with patients without chronic conditions (13.7 [95% CI, 11.6-15.8] vs 24.1 [95% CI, 22.4-25.7], P &lt; .001). A 10-point decrement in the PedsQL total admission score below the established community-based mean was associated with an increase in risk for prolonged length of stay (15% [95% CI, 13%-17%]), 30-day readmissions (8% [95% CI, 3%-14%]), and ED return visits (13% [95% CI, 6%-20%]). A 5-point decrement in the PedsQL total improvement score below the study sample mean improvement score was associated with an increase in risk for 30-day readmissions or ED return visits (9% [95% CI, −1% to 19%]). CONCLUSIONS AND RELEVANCE: The PedsQL demonstrated responsiveness, construct validity, and predictive validity in hospitalized pediatric patients. The PedsQL may be a useful patient-reported outcome for hospital-based clinical effectiveness research.

The objective of this study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Gastrointestinal Symptoms Module for patients with functional gastrointestinal (GI) disorders (FGIDs) and organic GI diseases, hereafter referred to as “GI disorders,” for patient self-report ages between 5 and 18 and parent proxy-report for ages between 2 and 18 years. The 74-item PedsQL GI Module and 23-item PedsQL Generic Core Scales were completed in a 9-site study by 584 patients and 682 parents. Patients had physician-diagnosed GI disorders (such as chronic constipation, functional abdominal pain, irritable bowel syndrome, functional dyspepsia, Crohn disease, ulcerative colitis, gastroesophageal reflux disease). Fourteen unidimensional scales were derived measuring stomach pain, stomach discomfort when eating, food and drink limits, trouble swallowing, heartburn and reflux, nausea and vomiting, gas and bloating, constipation, blood, diarrhea, worry, medicines, and communication. The PedsQL GI Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report a = 0.97, parent proxy-report a = 0.97), and good-to-excellent reliability for the 14 individual scales (patient self-report a = 0.67–0.94, parent proxy-report a = 0.77–0.95). Intercorrelations with the Generic Core Scales supported construct validity. Individual Symptoms Scales known-groups validity across 7 GI disorders was generally supported. Factor analysis supported the unidimensionality of the individual scales. The PedsQL GI Module Scales demonstrated acceptable-to-excellent measurement properties and may be used as common metrics to compare GI-specific symptoms in clinical research and practice both within and across patient groups for FGIDs and organic GI diseases.

Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health-related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Module.

The objective of the present qualitative study was to develop the items and support the content validity for the Pediatric Quality of Life Inventory (PedsQL) Gastrointestinal Symptoms Module for pediatric patients with functional gastrointestinal (GI) disorders and organic GI diseases, hereafter referred to as GI disorders.

There are limited data on health-related quality of life (HRQOL) in pediatric patients with long-standing pancreatitis (including acute relapsing and chronic pancreatitis) using age-appropriate measurement instruments.

Background: Studies show that hospital built environments can affect physical and psychological outcomes and healthcare satisfaction in adults, but pediatric research is sparse.Objective: To investigate the effects of the built environment on hospitalized pediatric hematology-oncology patients and their parents by testing the hypothesis that perceived built environment satisfaction mediates the relationship between the objective built environment and psychosocial functioning, as well as parental healthcare satisfaction.Methods: The hospital built environment was evaluated subjectively through the PedsQL™ Hospital Healing Environment Module satisfaction questionnaires and objectively by quantifying environmental features. Outcomes for patients and parents included present functioning and affect. Healthcare satisfaction was also assessed for parents. Structural equation modeling (SEM) was used to test the mediational hypothesis.Subjects: Participants were 90 hospitalized pediatric hematology-oncology patients and 149 parents of pediatric hematology-oncology patients.Results: For both parents and children, analyses revealed a significant positive relationship between the quality of the objective built environment and built environment satisfaction. For parents, significant relationships emerged in the expected direction between built environment satisfaction and present functioning, healthcare satisfaction, and negative affect.Conclusions: Both pediatric hematology-oncology patients and their parents can reliably report their own perceived built environment satisfaction, which is significantly related to the quality of the objective built environment. For parents, results support the mediational hypothesis, highlighting the importance that perceived built environment satisfaction plays in psychosocial functioning and healthcare satisfaction.

To evaluate the reliability and validity of the PedsQL™ 3.0 Neuromuscular Module (NMM) in assessing health-related quality of life in the Duchenne muscular dystrophy (DMD) population for use as a secondary outcome measure in phase III clinical trials.

Item response theory (IRT) is increasingly being applied to health-related quality of life instrument development and refinement. This article discusses results obtained using categorical confirmatory factor analysis (CCFA) to check IRT model assumptions and the application of IRT in item analysis and scale evaluation.

The PedsQL™ Measurement Model was designed as a modular approach to measuring pediatric health-related quality of life, and developed to integrate the relative merits of generic and disease-specific approaches. The PedsQL™ 4.0 Generic Core Scales have been translated into over 60 languages, with published data on over 25,000 children and adolescents in more than 75 peer-reviewed journals since 2001 for healthy children and numerous pediatric chronic health conditions. The PedsQL™ Disease and Condition-Specific Modules were designed to measure health-related quality-of-life dimensions specifically tailored for pediatric chronic health conditions, and include the PedsQL™ Asthma, Arthritis/Rheumatology, Cancer, Diabetes, Cardiac and Cerebral Palsy Modules, as well as the generic PedsQL™ Multidimensional Fatigue Scale, Pediatric Pain Questionnaire™, Family Impact Module and Healthcare Satisfaction Module. The PedsQL™ has demonstrated reliability, validity, sensitivity and responsiveness for child self report for ages 5–18 years and parent proxy report for ages 2–18 years. The PedsQL™ has been shown to be related to other key constructs in pediatric healthcare such as access to needed care, healthcare barriers and quality of primary care. Future advances in the PedsQL™Measurement Model include web-based electronic administration (ePedsQL™), integration into the electronic medical record, further efficacy and effectiveness outcome trials, including PedsQL™ ResourceConnectSMand PedsQL™ TIPSSM, the development of the generic PedsQL™ Infant Scales for ages birth to 24 months and disease and condition-specific modules for other pediatric chronic health conditions.

Increasing healthcare costs and the prevalence of managed care make population health management an imperative. Health-related quality of life (HRQOL) is a multidimensional construct that includes both physical and psychosocial (i.e., social, emotional and role) dimensions. Early studies suggest that HRQOL can predict costs of care for pediatric populations. A key issue is how to manage the care of those identified as high need. Here again, HRQOL measurement can be useful. HRQOL measurement in the clinical setting can streamline and structure the clinical interview, potentially leading to enhanced assessment. It can also make it easier for busy pediatricians to explore and address issues of psychosocial functioning. A particularly promising area for HRQOL is in identifying, proactively, suitable candidates for case management in large enrolled populations. Further research should extend the initial studies on HRQOL predicting utilization and cost, more thoroughly specify the proportion of identified costs that are manageable and care managements effect on care for different groups of children, document the causal links between physiologic variables and HRQOL on one hand and patient functioning on the other, and understand the conditions necessary for HRQOL assessment to affect clinical practice.

Abstract

We sought to assess the reliability and validity of the PedsQL™ 4.0 SF15, a shortened version of the 23-item PedsQL™ 4.0 Generic Core Scales, which is a pediatric health-related quality of life (HRQoL) instrument, and the PedsQL™ 3.0 SF22 Asthma Module, a short-form of the PedsQL™ 3.0 Asthma Module.

Pediatric patients with brain tumors (BT) are often excluded from health‐related quality of life (HRQOL) studies even though they experience more severe disease and treatment‐related sequelae than children with other types of cancer. Parent proxy assessments of HRQOL allow for greater inclusion of children who are developmentally immature, physically ill, or cognitively impaired.Parents of children ages 2–18 years who were diagnosed at Childrens Hospital Los Angeles and Children's Hospital San Diego with BT (n = 86) or acute lymphoblastic leukemia (ALL; n = 170) evaluated their children's HRQOL over the previous week using the parent‐proxy versions of the Pediatric Quality of Life Inventory (PedsQL™) 4.0 Generic Core scales, the PedsQL™ 3.0 Acute Cancer Module, and the PedsQL™ Multidimensional Fatigue scales. Multiple regression analyses were used to determine the independent effect of the child's diagnosis on HRQOL. Separate analyses were conducted for patients receiving treatment, patients who had not received treatment for < 12 months, and patients who had not received treatment for ≥ 12 months.Patients with BT exhibited more problems than patients with ALL in the physical, social, psychosocial, school, cognitive, and fatigue domains of HRQOL. The Core Physical Health, Core Psychosocial Health, and Fatigue Total scores for patients with BT demonstrated peak improvements for children who had not received treatment for < 12 months and sharp declines for children who had not received treatment for ≥ 12 months. The Core Physical Health and Fatigue Total scores for patients with ALL were highest (better HRQOL) for those who had not received treatment for ≥ 12 months.Pediatric patients and survivors of BT experienced more fatigue and HRQOL problems than patients with ALL, and HRQOL differed by treatment status. Cancer 2004. © 2004 American Cancer Society.

Snoring and sleep-disordered breathing (SDB) are highly prevalent among children. The increasing trends of obesity in the pediatric population further predict an exacerbation of this public health problem. However, the impact of SDB on mood and quality of life and the confounder effect of obesity in this setting are unclear.

The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2–18 years. The 23-item PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL disease-specific modules. The 22-item PedsQL 3.0 Rheumatology Module was designed to measure pediatric rheumatology–specific HRQOL. This study was undertaken to demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology. The 4 PedsQL 4.0 Generic Core Scales (physical, emotional, social, and school functioning) and the 5 PedsQL 3.0 Rheumatology Module scales (pain and hurt, daily activities, treatment, worry, and communication) were administered to 231 children and 244 parents (271 subjects accrued overall) recruited from a pediatric rheumatology clinic. Internal consistency reliability for the PedsQL Generic Core total scale score (α = 0.91 for child self report, α = 0.93 for parent proxy report), physical health summary score (α = 0.87 for child self report, α = 0.89 for parent proxy report), and psychosocial health summary score (α = 0.86 for child self report, α = 0.90 for parent proxy report) were acceptable for group comparisons. The Rheumatology Module scales also demonstrated acceptable reliability for group comparisons (α = 0.75–0.86 for child self report, α = 0.82–0.91 for parent proxy report). Validity was demonstrated using the known-groups method. The PedsQL distinguished between healthy children and children with rheumatic diseases as a group. The responsiveness of the PedsQL was demonstrated through patient change over time as a result of clinical intervention. The results demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology.

The Leichtag Family Healing Garden at Children's Hospital and Health Center, San Diego was planned and built as a healing environment space for patients, families, and staff. A Post-Occupancy Evaluation (POE) was conducted to determine whether the garden was meeting the goals of reducing stress, restoring hope and energy, and increasing consumer satisfaction. Results from behavioral observations, surveys, and interviews indicated a number of benefits of the garden. The garden was perceived as a place of restoration and healing, and use was accompanied by increased consumer satisfaction. However, the garden was not utilized as often or as effectively as intended. Children, parents and many staff members recommended changes for the garden, such as the inclusion of more trees and greenery, and more interactive ‘things for kids to do’. In addition, the majority of family members surveyed throughout the hospital did not know about the garden. Based on the findings, recommendations for changes were developed to promote better use of the garden. These research findings can be used to guide the future planning, design, building, and subsequent evaluation of garden environments in children's hospitals and pediatric settings.

The PedsQL (Pediatric Quality of Life Inventory) (Children’s Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions.