Proxy-report Scales Research Articles

The Role and Importance of Quality of Life among Preschool Children as a Prerequisite for a Positively Oriented Upbringing

The aim of this study was to evaluate the health-related quality of life (QoL) in a sample of healthy preschool children in the Republic of Croatia and comment on whether and how the research results open the preconditions for positive individual scenarios of the future related to positively oriented upbringing. The Pediatric quality of life inventory generic core scales (PedsQLTM) was completed by 230 healthy preschool children (5-6 years old) and their parents as a proxy-report. The data was descriptively analysed first. Reliability was assessed by Cronbach’s alpha. The statistically significant difference between the PedsQLTM scales (physical, emotional, social, kindergarten and psychosocial functioning) for preschool children and their parent’s proxy-report were analysed. The PedsQLTM scale score means for children’s self-report ranged 71.32-76.49, with the total score was 74.53. Score means for their parent’s proxy-report scale ranged 73.59-85.46, with the total score of 80.93. All the self-report and proxy-report scales showed satisfactory reliability with Cronbach’s alpha varying between 0.64 and 0.89. Statistically significant difference between scales in self-report and proxy-report was for physical (t=-7.12, p<0.01), social (t=-6.42, p<0.01) and school functioning (t=-2.62, p<0.01) as well as psychosocial (t=-4.82, p<0.01) and total health (t=-6.85, p<0.01). The Croatian PedsQLTM is valid and reliable generic pediatric health-related QoL measurement that can be recommended for children’s self-reports and their parent’s proxy-reports. The results of the research open a precondition for positive individual scenarios of the future related to positively oriented upbringing.

Caregiver reported long-term outcomes in children with major trauma and traumatic brain injuries: A single-centre retrospective study.

We aim to investigate the functional outcomes and long-term health-related quality of life (HRQOL) in children with major trauma associated with traumatic brain injury (TBI). We performed a retrospective review of records among patients >2 and ≤16 years old in a tertiary paediatric hospital between January 2014 and October 2019 with major trauma (Injury Severity Score of ≥16) and TBI of all severities. We recorded each child's Glasgow Outcome Scale-Extended Pediatric Version (GOS-E Peds) at 12 months post-injury and Pediatric Quality of Life Inventory (PedsQL) scores at 6 and 12 months post-injury based on the parent proxy-report scales. We included 53 patients with a median age of 9.0 years old (interquartile range 2.3-15.5). Most injuries were due to falls (30, 56.6%) or road traffic collisions (15, 28.3%); 41 patients (77.3%) required intensive care while 30 patients (56.6%) underwent neurosurgical intervention. Most patients (43, 81.1%) had GOS-E Peds scores of ≤2 at 12 months post-injury. We reported a significant mean difference between the 6- and 12-month parent-reported scores for physical functioning (6.6, 95% confidence interval [CI] 0.3-12.8, P=0.041), psychosocial functioning (4.1, 95% CI 1.0-7.2, P=0.012) and overall scores (5.0, 95% CI 1.4-8.7, P=0.008). Compared with the validated PedsQL scores, our mean scores were higher across all domains at 12 months. With current standard of care, parents of children with major trauma and TBI reported gains in quality of life, physical, psychosocial and overall function between 6 and 12 months post-injury.

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.

Development of a proxy-reported scale to assess motor function in infants and young children with early-onset neuromuscular disorders.

To develop a novel proxy-reported scale of motor function in infants and young children with early-onset neuromuscular disorders (NMD), entitled the Proxy Motor Outcome Measure (PMOM). A mixed method design was employed, applying both qualitative and quantitative research. A framework technique using sensitivity analyses guided the development of the most appropriate and relevant subset of items, modelled after 30 neuromuscular disease instruments/scales. The PMOM was designed based on semi-structured interviews with 16 proxies; a focus group of 11 experts in neuromuscular diseases and scale development, 10 of whom also gave quantitative data using a two-round Delphi method survey; and cognitive interviews with five proxies. These processes were conducted between January 2014-March 2019. Nine themes and 32 subthemes were derived from the semi-structured interviews. Five domains and three subdomains of potential items were identified by the focus group. An initial version of the PMOM scale was created with 121 items. Using the two-round Delphi method, 43 items met agreement on pre-defined requirements. The second version of the PMOM scale included these 43 and two additional items based on expert feedback. Proxies gave 114 suggestions on cognitive interviews, 99 of which were successfully addressed by the research team. The final version of the PMOM scale included 43 items. We developed a preliminary proxy-reported instrument, the PMOM, to evaluate motor function in infants and young children with early-onset NMD. Proxies hold a wealth of knowledge on their child's motor function during early development, which may complement clinic-based motor function testing. However, there is no validated measure of motor function that incorporates the observation of proxies of infants and young children with NMD. Future work will be focused on assessing the reliability, validity and responsiveness of the PMOM scale and implementing this tool in clinical studies.

1554P - Impact of cancer on the quality of life of Tunisian pediatric patients

Background: The PedsQL (Pediatric Quality of Life Inventory) is an instrument which measures health-related quality of life (HRQOL) in children and young adults. The PedsQL 4.0 Generic Core Scales (GCS) are child self-report and parent proxy-report scales developed to be integrated with the PedsQL disease specific modules. The PedsQL 3.0 Cancer Module (CM) was designed to measure pediatric cancer specific HRQOL. The aim of this study was to evaluate the impact of their disease and its treatments on their physical, mental and social health. Methods: This prospective study included 26 patients newly diagnosed and relapsed, on-treatment, from the pediatric ward of Salah Azaiez Institute. Their ages were 5 to 25 years-old. The 23-item PedsQL 4.0 GCS encompass 4 scales: physical, emotional, social, and school functioning. The cancer module scales has 27 items which encompasses 8 scales: pain and hurt, nausea, procedural anxiety, treatment anxiety, worry, cognitive problems, perceived physical appearance and communication. The format instructions, response scale and scoring method are identical for GCS and CM. The scores are between [0-100]. We translated the English version of the GCS and the CM into arabic. Results: All the children completed their self-report .The mean age was 15.5 years-old.53.8% were boys.27.07% of patients had brain tumors, 19.2% osteosarcoma,19.2% Ewing sarcoma and 11.5%Undifferentiated nasopharyngeal cancer (UCNT). Twenty patients were newly diagnosed. Eight cases had metastatic disease.The child total GCS mean was 60.86 physical score mean 64.06 and social score mean 67.5. For the child total CM score mean, it was 61.53 ; pain score mean 75, nausea score mean 50 which is the lowest and the worry score mean 62.49 . We found that the nausea score is higher for children with intensive chemotherapy (p value=0.026). The parent proxy total GCS mean was lower than the child`s score 58.69 as well as the total CM parent score mean which was 60.17. We didn`t find significant difference between the age of the patient, staging of his disease and the pedsQL scores. Conclusions: The HRQL of children is adversely affected as a result of the uncontrolled symptoms from cancer treatment. In Tunisia, we should work more to improve the pediatric HRQL. Legal entity responsible for the study: Salah Azaiez Intitute. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.

NIH Toolbox® Emotion Batteries for Children: Factor-Based Composites and Norms.

The recently released National Institutes of Health Toolbox (NIHTB) batteries for neurological and behavioral function were designed to serve as standardized, common measures in clinical and epidemiological research. The current study aimed to examine constructs assessed by the self-report and parental proxy-report scales in the NIHTB Emotion Battery (NIHTB-EB) for Children by using factor analyses on data from the U.S. national normative sample of 2,916 English-speaking children. This battery contains 31 scales designed to assess both positive and negative aspects of social and emotional functioning that are considered developmentally relevant at each of three age ranges (3-7, 8-12, and 13-17 years). Results revealed four similar self-report factors for ages 8 to 12 years and 13 to 17 years. Proxy reports for ages 3 to 7 years revealed three factors, and for ages 8 to 12 years two factors. Based on the standardization sample data, age- and gender-corrected norms are presented for all NIHTB-EB individual scales and factor-based composites.

Translation and validation of Pediatric Quality of Life Inventory™ 3.0 Diabetes Module (PedsQL™ 3.0 Diabetes Module) in Brazil-Portuguese language

ObjectiveThe aim of the present study was to create a translated version of the Pediatric Quality of Life Inventory™ 3.0 Diabetes Module (PedsQL™ 3.0 Diabetes Module) in Brazilian Portuguese that was conceptually equivalent to the original American English version and to linguistically validate it in a Brazilian pediatric population with type 1 diabetes mellitus and their parents or caregivers. MethodsThe instrument was translated, back-translated, and then administered to 83 children/adolescents (5–18 years) with type 1 diabetes mellitus and their family members and to 25 parents/caregivers of patients aged between 2 and 4 years. The final translated version was tested for reliability by analyzing internal consistency, intraobserver (test–retest) reliability, and concurrent validity. ResultsCronbach's alpha coefficient for the total score of the questionnaires of children/adolescents (α=0.85) and their parents (α=0.82) was above the recommended minimum of 0.70 for group comparisons. Intraobserver reliability and concurrent validity exhibited a significant positive correlation (p<0.001), indicating the reliability of the translated instrument. A moderate but significant positive correlation (r=0.40; p<0.001) was demonstrated between the total scores of patient self-report and parent proxy-report scales. There was no significant correlation between glycated hemoglobin (HbA1c) levels and the respective scores in the questionnaires answered by patients and their parents/caregivers. ConclusionThe analysis of the translated version of the PedsQL™ 3.0 Diabetes Module revealed adequate psychometric characteristics with respect to reliability and validity following administration to a sample of Brazilian children/adolescents with type 1 diabetes mellitus and their caregivers.

Italian translation, cultural adaptation and validation of the PedsQL™ 3.0 Diabetes Module questionnaire in children with type 1 diabetes and their parents.

BackgroundThe PedsQL™3.0 Diabetes Module is a widely used instrument to measure the disease-specific health-related quality of life summary measures in children and adolescents with type 1 diabetes. After cultural adaptation, we confirmed reliability and validity of PedsQL™3.0 Diabetes Module in its Italian version.MethodsParticipants were 169 Italian children and adolescents with type 1 diabetes aged 5–18 years and 100 parents. Reliability was determined by internal consistency using Cronbach’s coefficient alpha, and test-retest reliability by intra-class correlation coefficient (ICC). Validity was assessed through factor validity examined by exploratory factor analysis, and discriminant validity examined through multitrait/multi-item scaling analysis. Discriminant validity with respect to dichotomous patients’ characteristics at baseline was also examined through a multivariate analysis on the summary measures using the Wilks’ Lambda test.ResultsData completeness was optimal. Item internal consistency was satisfied at 89% for the child self-report scales and at 100% for the parents’ proxy-report scales. Most diabetes module scales was acceptable for group comparisons. Discriminant validity was satisfied for 71% of children and adolescents and for 82% of parents. A ≥70% Cronbach’s α coefficient was found for the summary measures of both reports. For the test-retest reliability, the ICC coefficients ranged from 0.66 (i.e., the Worry scale) to 0.82 for the other scales of the child self-report. The ICC coefficients were ≥0.87 for all the parents’ proxy-report scales. Factor analysis showed that the PedsQL™3.0 Diabetes Module for child self-report could be summarized in 10 components, which explained the 62% of the variance. For the parent proxy-report the statistical analysis selected 9 factors, which explained about 68% of variance. The external discriminant validity of the PedsQL™3.0 Diabetes Module summary measures were compared across gender, age, time since diagnosis and HbA1c mean cut off values. Significant differences in the “Treatment adherence” scale and in the “Communication” scale were observed across age, and by time since diagnosis.ConclusionsThe results show the reliability and validity of the Italian translation of the PedsQL™3.0 Diabetes Module, supporting therefore its use as an outcome measure for diabetes cross-national clinical trials and research.

Reliability and validity of the PedsQL™ Generic Core Scales 4.0 for Chinese children with epilepsy

This investigation examines the reliability and validity of the Chinese version of the PedsQL 4.0 Generic Core Scales for prognostic measures of pediatric epilepsy. The study comprised 163 parents whose children, between the ages of 2 and 18years, were diagnosed with epilepsy. The parents were given a questionnaire to be completed on behalf of the child. Reliability was assessed by Cronbach's alpha analysis. Validity was assessed by the exploratory factor analysis and intercorrelation analysis between the four subscales as well as Student's t-test. The internal consistency reliability for Total Scale Score was 0.94 by Cronbach's alpha test. Four major factors were extracted by factor analysis. The scores from all sub-scales derived from healthy children were significantly higher than children with epilepsy (P<0.001). The reliability and validity of the parent proxy-report scales from the Chinese version of the PedsQL™ 4.0 Generic Core Scales effectively matched the original version and could be used to evaluate the health-related quality of life of children with epilepsy.

PROMIS® Parent Proxy Report Scales: an item response theory analysis of the parent proxy report item banks

The objective of the present study is to describe the item response theory (IRT) analysis of the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS(®)) pediatric parent proxy-report item banks and the measurement properties of the new PROMIS(®) Parent Proxy Report Scales for ages 8-17 years. Parent proxy-report items were written to parallel the pediatric self-report items. Test forms containing the items were completed by 1,548 parent-child pairs. CCFA and IRT analyses of scale dimensionality and item local dependence, and IRT analyses of differential item functioning were conducted. Parent proxy-report item banks were developed and IRT parameters are provided. The recommended unidimensional short forms for the PROMIS(®) Parent Proxy Report Scales are item sets that are subsets of the pediatric self-report short forms, setting aside items for which parent responses exhibit local dependence. Parent proxy-report demonstrated moderate to low agreement with pediatric self-report. The study provides initial calibrations of the PROMIS(®) parent proxy-report item banks and the creation of the PROMIS(®) Parent Proxy-Report Scales. It is anticipated that these new scales will have application for pediatric populations in which pediatric self-report is not feasible.

The Psychometric Qualities of Four Observational Pain Tools (OPTs) for the Assessment of Pain in Elderly People with Osteoarthritic Pain

Pain in cognitively impaired elderly people (CIEP) often goes unrecognized. Observational pain tools (OPTs) have been designed, but with limited evidence to support their psychometric qualities. This study compared four OPTs (the Pain Assessment IN Advanced Dementia [PAINAD], Abbey Pain Scale [Abbey PS], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], and Discomfort Scale--Dementia of Alzheimer Type [DS-DAT]), two self-report scales, and two proxy-report scales in assessing osteoarthritic (OA) pain among CIEP. Participants (n=124) were divided into two groups: cognitively intact and impaired. They were observed by two raters simultaneously at rest and during a standardized exercise program. Besides reliabilities, the correlation between the OPTs and the self-report/proxy-report scores was evaluated. The OPT scores collected during different activity levels were compared to establish the convergent and discriminant validity. Confirmatory factor analysis was used to evaluate the construct validity. Similar and accepted patterns of reliability/validity were obtained for all OPTs, in which better levels of psychometric properties were consistently obtained during exercise. However, a single construct (OA pain) appeared only in the PAINAD and Abbey PS after deletion of the "breathing" and "physiological change" indicators, respectively. This showed that OPTs were better used to detect OA pain when pain was triggered by movement (i.e., an exercise program). The PAINAD and Abbey PS appeared to be more reliable and valid for assessing OA pain while using an exercise program among elderly people, regardless of their cognitive ability.

Pediatric Health‐Related Quality of Life: Feasibility, Reliability and Validity of the PedsQL™ Transplant Module

The measurement properties of the newly developed Pediatric Quality of Life Inventory (PedsQL) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty-eight parents of children ages 2-18 and 274 children ages 5-18 completed both the PedsQL 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self-report and parent proxy-report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self-report alpha= 0.93; total scale score for parent proxy-report alpha= 0.94). Transplant-specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.

Measuring Health-Related Quality of Life in Children Living in HIV/AIDS-Affected Families in Rural Areas in Yunnan, China: Preliminary Reliability and Validity of the Chinese Version of PedsQL 4.0 Generic Core Scales

To investigate the preliminary reliability and validity of the Chinese Mandarin version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales in a sample of general children and children living in HIV/AIDS-affected families. The PedsQL 4.0 was administered to 116 children aged 8-18 years from HIV/AIDS-affected families and 115 of their caregivers. The questionnaire was also administered to a control group of 109 children and 107 of their caregivers. Most of the self-report and proxy-report scales in both groups exceeded the reliability standard of 0.70, whereas the self-report emotional functioning and school functioning subscales were slightly less than 0.70. On average, children living in HIV/AIDS-affected families scored significantly lower than the control group. The level of agreement between self-reports and proxy reports was low. Correlations were higher on average for the younger age group than for the older age group. The Chinese Mandarin version of PedsQL 4.0 is a valid and reliable instrument for use with children living in HIV families. The health-related quality of life for children living in HIV families is lower than children from ordinary families.

Health Related Quality of Life (Hrqol) in Children After Major Urinary Tract Reconstruction

Purpose HRQOL scores, obtained using the 23 item Pediatric Quality of Life Inventory (PedsQL), (Varni et al. Medical Care 1999; 33,2, 126-139), assess the physical, emotional, psychosocial, social and school functioning of patients. Patients and their parents completed this tool following major reconstruction of the lower urinary tract. Material and Methods 44 patients were reconstructed by a single surgeon between 2002 and 2008 (mean follow up 50 months). PedsQL questionnaires were sent to families for completion by both the child (self-report) and a parent (proxy-report). 35 were completed (response rate 79%) and 30 were suitable for analysis. All patients had undergone Ileocystoplasty and Mitrofanoff formation. 5 also had an ACE procedure and 10 a bladder neck reconstruction. Results were compared to age matched normal controls and other chronic childhood diagnoses [diabetes, asthma, inflammatory bowel disease (IBD) and cancer]. Within our group we considered the effects of age (15 pts 12 years), gender (16 M, 14F), diagnosis (15 neuropathic bladder, 8 anorectal anomaly, 6 exstrophy, 5 others), surgical procedure and outcome. Results Internal reliability score for both self- and proxy-report scales was α > 0.9 for all items. Statistical comparison with control groups revealed significantly lower scores (p Conclusions HRQOL scores are significantly lower in reconstructed patients. This may be related to on going management of the neo-bladder. These patients need long-term psychological support.

MEASURING QUALITY OF LIFE IN GREEK CHILDREN: FIRST PSYCHOMETRIC RESULTS OF THE GREEK VERSION OF THE PEDIATRIC QUALITY OF LIFE INVENTORY (PEDSQL) 4.0 GENERIC CORE SCALES

INTRODUCTION: Health-related quality of life concerning children is a growing field of research. The Pediatric Quality of Life Inventory (PedsQL) is a promising instrument that is available in age-appropriate versions and parallel forms for both children and their parents. OBJECTIVE: The purpose of this study was to evaluate the psychometric properties of the Greek translation of the PedsQL 4.0 generic core scales in a sample of healthy children. METHODS: After a successful pilot test, the Greek PedsQL was used in a cross-sectional study of 645 healthy 8- to 12-year-old schoolchildren and 567 of their caregivers within the framework of the European project (KIDSCREEN). Reliability of the instrument was assessed by Cronbach's α. Construct validity was assessed by exploring the intercorrelations between the 4 PedsQL subscales and between self- and proxy-report subscales. Impact of gender, health status, and socioeconomic class was detected. RESULTS: All PedsQL scales showed satisfactory reliability (&amp;gt;.70). Correlations among self-report subscales and between self- and proxy-report subscales were significant. Girls reported lower health-related quality of life than boys on the emotional-functioning subscale. There were significant differences in scores between low and high socioeconomic groups. Healthy children scored significantly higher on all self- and proxy-report scales. CONCLUSIONS: The PedsQL Greek version for children 8 to 12 years old is a valid and reliable instrument, replicating some of the earlier findings of the original version. The Greek PedsQL 4.0 version will be a valuable tool that can be used effectively in quality-of-life measurement in Greek clinical trials and population-based exercises.

Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales.

BackgroundHealth-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While pediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL™ DatabaseSM were utilized to test the reliability and validity of parent proxy-report at the individual age subgroup level for ages 2–16 years as recommended by recent FDA guidelines.MethodsThe sample analyzed represents parent proxy-report age data on 13,878 children ages 2 to 16 years from the PedsQL™ 4.0 Generic Core Scales DatabaseSM. Parents were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 3,718, 26.8%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 10,160, 73.2%).ResultsThe percentage of missing item responses for the parent proxy-report sample as a whole was 2.1%, supporting feasibility. The majority of the parent proxy-report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL™ scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range.ConclusionThe results demonstrate the feasibility, reliability, and validity of parent proxy-report at the individual age subgroup for ages 2–16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as pediatric patient self-report is advocated, there remains a fundamental role for parent proxy-report in pediatric clinical trials and health services research.

Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales

BackgroundHealth-Related Quality of Life (HRQOL) studies concerning children and adolescents are a growing field of research. The Pediatric Quality of Life Inventory (PedsQL™) is considered as a promising HRQOL instrument with the availability of age appropriate versions and parallel forms for both child and parents. The purpose of the current study was to evaluate the psychometric properties of the Norwegian translation of the Pediatric Quality of Life Inventory (PedsQL™) 4.0 generic core scale in a sample of healthy young adolescents.MethodsA cross-sectional study of 425 healthy young adolescents and 237 of their caregivers participating as a proxy. Reliability was assessed by Cronbach's alpha. Construct validity was assessed using exploratory factor analysis and by exploring the intercorrelations between and among the four PedsQL subscales for adolescents and their parents.ResultsAll the self-report scales and proxy-report scales showed satisfactory reliability with Cronbach's alpha varying between 0.77 and 0.88. Factor analysis showed results comparable with the original version, except for the Physical Health scale. On average, monotrait-multimethod correlations were higher than multitrait-multimethod correlations. Sex differences were noted on the emotional functioning subscale, girls reported lower HRQOL than boys.ConclusionThe Norwegian PedsQL is a valid and reliable generic pediatric health-related Quality of Life measurement that can be recommended for self-reports and proxy-reports for children in the age groups ranging from 13–15 years.

The PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and type 1 Diabetes Module.

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 Core Scales are 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 3.0 Type 1 Diabetes Module was designed to measure diabetes-specific HRQOL. The PedsQL Generic Core Scales and Diabetes Module were administered to 300 pediatric patients with type 1 or type 2 diabetes and 308 parents. Internal consistency reliability for the PedsQL Generic Core Total Scale score (alpha = 0.88 child, 0.89 parent-report) and most Diabetes Module scales (average alpha = 0.71 child, 0.77 parent-report) was acceptable for group comparisons. The PedsQL 4.0 distinguished between healthy children and children with diabetes. The Diabetes Module demonstrated intercorrelations with dimensions of generic and diabetes-specific HRQOL. The results demonstrate the reliability and validity of the PedsQL in diabetes. The PedsQL may be used as an outcome measure for diabetes clinical trials and research.

The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ generic core scales and rheumatology module

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 (alpha = 0.91 for child self report, alpha = 0.93 for parent proxy report), physical health summary score (alpha = 0.87 for child self report, alpha = 0.89 for parent proxy report), and psychosocial health summary score (alpha = 0.86 for child self report, alpha = 0.90 for parent proxy report) were acceptable for group comparisons. The Rheumatology Module scales also demonstrated acceptable reliability for group comparisons (alpha = 0.75-0.86 for child self report, alpha = 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.

PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

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. The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.