Psychometric properties of the Swedish PedsQL, Pediatric Quality of Life Inventory 4.0 generic core scales

Aim:  To study the psychometric performance of the Swedish version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 generic core scales in a general child population in Sweden.
Methods:  PedsQL forms were distributed to 2403 schoolchildren and 888 parents in two different school settings. Reliability and validity was studied for self-reports and proxy reports, full forms and short forms. Confirmatory factor analysis tested the factor structure and multigroup confirmatory factor analysis tested measurement invariance between boys and girls.
Results:  Test-retest reliability was demonstrated for all scales and internal consistency reliability was shown with α value exceeding 0.70 for all scales but one (self-report short form: social functioning). Child-parent agreement was low to moderate. The four-factor structure of the PedsQL and factorial invariance across sex subgroups were confirmed for the self-report forms and for the proxy short form, while model fit indices suggested improvement of several proxy full-form scales.
Conclusion:  The Swedish PedsQL 4.0 generic core scales are a reliable and valid tool for health-related quality of life (HRQoL) assessment in Swedish child populations. The proxy full form, however, should be used with caution. The study also support continued use of the PedsQL as a four-factor model, capable of revealing meaningful HRQoL differences between boys and girls.     

The reliability of the Health Related Quality Of Life questionnaire PedsQL 3.0 Diabetes Module™ for Swedish children with type 1 diabetes

Aim: The overall aim of the study was to assess reliability and accomplish a limited validation of the Pediatric Quality of Life Inventory 3.0 Diabetes Module Scales (PedsQL 3.0), Swedish version in a sample of Swedish children diagnosed with Type 1 diabetes (T1DM). A secondary aim was to assess whether the children’s Health Related Quality of Life (HRQOL) was associated with children’s gender and age and whether the child self‐ and parent proxy reports were consistent. Methods: One hundred and thirty families from four diabetes centres participated in this study. The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL 4.0) and the PedsQL 3.0 were administered to 108 children (aged 5–18 years) with T1DM and 130 parents (of children with T1DM aged 2–18 years). Results: The internal consistency of the PedsQL 3.0, Swedish version, reached or exceeded Cronbach’s alpha values of 0.70 for both child self‐ and proxy reports‐ and parent proxy‐reports. The PedsQL 4.0 and PedsQL 3.0 were highly correlated (r = 0.76), indicating convergent validity. The parents reported lower diabetes‐specific HRQOL than the children themselves (p < 0.01). The girls in the study reported lower psychological functioning and treatment adherence compared with the boys (p < 0.05). The oldest children (between 13 and 18 years of age) reported significantly lower diabetes‐specific HRQOL, as compared with younger children (p < 0.05). Conclusions: PedsQL 3.0 Diabetes Module can be used as a valuable tool for measuring diabetes‐specific HRQOL in child populations, both in research and in clinical practice.     

Measuring quality of life in Japanese children: Development of the Japanese version of PedsQL

Background:  Health-related quality of life (HRQL) is perceived as an important health-care outcome. There are several systems for measuring the HRQL in adults but there are few such systems for children in Japan. Pediatric Quality of Life Inventory (PedsQL) is valid and demonstrates excellent reliability in the USA, Europe, and Asian countries. The aim of the present study was therefore to develop the Japanese version of PedsQL.
Methods:  A two-step procedure was performed: translation of PedsQL, followed by examination of the psychometric properties in a cross-sectional study. The feasibility, reproducibility, internal consistency reliability, factor structure, and concurrent and clinical validity were examined.
Results:  The internal consistency reliability of the Child Self-Reports of young children was slightly low, but that of the Child Self-Reports of school children and adolescents was good. Further, all the Parent Proxy-Reports had excellent alphas. The Japanese version had satisfactory feasibility for all age ranges. The intercorrelation of subscales supported the multidimensional factor structure. Clinical validity was examined by analysis of variance performed for four groups with different health conditions (healthy, chronic needs only, mental condition only, and chronic needs and mental condition). The scores of each functioning scale differed among the four groups, with the healthy group having the highest scores for all functioning scales.
Conclusions:  The Japanese version of PedsQL can be applied in community and school health settings in Japan. Because children with chronic health needs and mental conditions were included, the Japanese version of PedsQL is expected to be useful in clinical settings.     

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation

Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock‐BarZiv SM. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.
Pediatr Transplantation 2010:14:249–256. © 2009 John Wiley & Sons A/S. Abstract: Kidney transplantation is an optimal therapy for pediatric patients with end‐stage kidney disease. This pilot study sought to examine multidimensional QOL outcomes after kidney transplant using VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module. Sample included 12 adolescents aged 13–18 yr and their parent; three children aged eight to 12 yr and their parent; and six parents of children aged two to seven yr. All were 73 months post transplant. The median age at transplant was 9.3 yr and median time since transplant was 3.2 yr. VAQOL mean was 7.7/10 (child report) and 7.3/10 (parent report); the mean general health was 7.4/10. High levels of fatigue (≥5/10) were reported in 43%. PedsQL subscale mean values were lower than healthy reference scores. PedsQL Renal Module demonstrated great concern with physical appearance and physical symptoms (thirst and headaches), difficulty with peer and family interaction, and school disruption. Low scores on parental emotional function depict the negative impact of transplant on family functioning. Discordance exists between child and parental reports of QOL. Prospective studies are needed to explore multidimensional QOL to improve long‐term outcomes after pediatric kidney transplant.     

The Parent Supervision Attributes Profile Questionnaire: a measure of supervision relevant to children''s risk of unintentional injury

OBJECTIVE: To further establish the psychometric properties of the Parent Supervision Attributes Profile Questionnaire (PSAPQ), a questionnaire measure of parent supervision that is relevant to understanding risk of unintentional injury among children 2 through 5 years of age. METHODS: To assess test-retest reliability, parents completed the PSAPQ twice, with a one month interval. Internal consistency estimates for the PSAPQ were also computed. Confirmatory factor analyses were applied to the data to assess the four factor structure of the instrument by assessing the convergent and divergent validity of the subscales and their respective items. RESULTS: Test-retest reliability and internal consistency scores were good, exceeding 0.70 for all subscales. Factor analyses confirmed the hypothesized model--namely that the 29 item questionnaire comprised four unique factors: protectiveness, supervision beliefs, risk tolerance, and fate influences on child safety. CONCLUSIONS: Previous tests comparing the PSAPQ with indices of actual supervision and children's injury history scores revealed good criterion validity. The present assessment of the PSAPQ revealed good reliability (test-retest reliability, internal consistency) and established the convergent and divergent validity of the four factors. Thus, the PSAPQ has proven to have strong psychometric properties, making it a unique and useful measure for researchers interested in studying links between supervision and young children's risks of unintentional injury.     

脑性瘫痪患儿生存质量相关因素多重线性回归分析

目的 分析影响脑性瘫痪(脑瘫)儿童生存质量的相关因素.方法　将确诊为脑瘫的80例患儿作为脑瘫组,同时选择80例同龄健康儿童作为健康对照组.采用儿童生存质量的PedsQL4.0普适性核心量表对2组儿童的生存质量进行评定,比较2组儿童生存质量的差异;采用粗大运动功能分级系统(GMFCS)评定脑瘫患儿粗大运动功能的级别,采用北京Gesell发育商评定脑瘫患儿的智力水平;采用多重线性回归分析脑瘫患儿生存质量与性别、月龄、家庭月收入、临床分型、GMFCS及智力水平6种相关因素之间的关系.结果 脑瘫组患儿的生理功能/领域、情感功能、社会功能、心理领域及总体生存质量均显著低于健康对照组儿童,差异均有统计学意义(Pa＜0.01).脑瘫患儿总体生存质量与智力水平呈相同趋势,智力水平越高,生存质量亦越高;脑瘫患儿生理领域生存质量与智力水平、GMFCS呈正向关系,与月龄呈反向关系,其中GMFCS对生存质量的影响最严重;患儿的心理领域与智力水平相关.结论　脑瘫患儿生存质量存在明显损害,智力水平及运动功能是影响其生存质量的重要因素.     

The reliability of the disabled children's quality-of-life questionnaire in Swedish children with diabetes

Aim: To determine the reliability of the disabled children’s quality‐of‐life measure (DISABKIDS) chronic generic questionnaire and diabetes module in children. The questionnaire is being evaluated for repeated routine health‐related quality‐of‐life (HrQoL) assessment and in association with the Swedish national paediatric diabetes registry (Swediabkids), which is a tool for regular clinical use. Methods: Children and parents completed the questionnaire during a routine visit to the diabetes clinic. In total, 120 families completed the test and retest. Split‐half reliability correlation and intraclass correlation (ICC) coefficients were calculated. Bland & Altman plots were calculated on the generic HRQoL domain. Results: Both child and parent versions showed good internal consistency. Test–retest ICC coefficients for the generic HrQoL module were 0.913 for the children and 0.820 for the parent version. All generic domains independently showed good reliability. The diabetes module had a score of 0.855 for children and 0.823 for parents. Split‐half correlation for generic and diabetes modules was 0.930 and 0.848 for children, 0.953 and 0.903 for parents. Bland and Altman plots showed substantial agreement between the two administrations for both children and parents. Conclusion: The DISABKIDS questionnaire is a reliable instrument for the repeated measurements of HrQoL in children with diabetes.     

An Exploratory Study of Self-reported Quality of Life in Children with Autism Spectrum Disorder and Intellectual Disability

We examined the content validity of the Pediatric Quality of Life Inventory? Young Child Self-report (PedsQL?-YC) in children with autism spectrum disorder (ASD) and intellectual disability and made recommendations for the development of a quality of life (QOL) measure. Ten children, 14 parents, and three teachers were recruited for focus groups and interviews. Focus groups and interviews were conducted to obtain their perceptions about the appropriateness of the PedsQL^TM-YC (Phase 1). Based on the results from Phase 1, recommendations for a QOL measure for children with ASD and intellectual disability were made (Phase 2). After piloting a QOL measure by children and subsequent interviews, further refinement was undertaken (Phase 3). Data from Phases 1 and 3 were analysed using thematic and content analyses. Findings suggest that a QOL measure for children with ASD and intellectual disability should be related specifically to the children’s daily life and contexts. Due to the specific cognitive and behavioural characteristics of this population, the wording, response options and presentation style of the existing PedsQL?-YC would need refinement. Questions about social interactions with friends appeared less relevant to children with ASD. These recommendations address the wording and formatting issues needed for a QOL measure for use in children with ASD and intellectual disability identified through qualitative research methods. Further research is needed to include additional or modified questions in the social domain.     

The PedsQL™ Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity

Background: The Pediatric Quality of Life Inventory (PedsQL™, Mapi Research Trust, Lyon, France; www.pedsql.org ) is a modular instrument designed to measure health-related quality of life and disease-specific symptoms in children and adolescents. The PedsQL Multidimensional Fatigue Scale was designed as a child self-report and parent proxy-report generic symptom-specific instrument to measure fatigue in pediatric patients. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes.
Methods: The 18-item PedsQL Multidimensional Fatigue Scale (General Fatigue, Sleep/Rest Fatigue, and Cognitive Fatigue domains) and the PedsQL 4.0 Generic Core Scales were administered to 83 pediatric patients with type 1 diabetes and 84 parents.
Results: The PedsQL Multidimensional Fatigue Scale evidenced minimal missing responses (0.3% child report and 0.3% parent report), achieved excellent reliability for the Total Fatigue Scale score (α= 0.92 child report, 0.94 parent report), distinguished between pediatric patients with diabetes and healthy children, and was significantly correlated with the PedsQL 4.0 Generic Core Scales supporting construct validity. Pediatric patients with diabetes experienced fatigue that was comparable to pediatric patients with cancer on treatment, demonstrating the relative severity of their fatigue symptoms.
Conclusions: The results demonstrate the measurement properties of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes. The findings suggest that the PedsQL Multidimensional Fatigue Scale may be utilized in the standardized evaluation of fatigue in pediatric patients with type 1 diabetes.     

The readability of paediatric patient information materials: Are families satisfied with our handouts and brochures?

OBJECTIVES:

To determine the grade reading level of eight easily available patient handouts for parents of children with otitis media, to calculate the internal reliability and consistency of seven readability tests, and to explore the relationship between the grade reading level of a handout and parent satisfaction.

METHODS:

Eight patient handouts developed for the parents of children with otitis media were collected, stripped of all formatting and analyzed using seven different readability formulas. Cronbach’s alpha and intraclass correlation coefficients (ICC) were calculated to determine the internal reliability and consistency of the seven formulas. Parents were surveyed on their satisfaction with three of the handouts, and their responses were compared with the handouts’ reading grade levels using ANOVA.

RESULTS:

Only four of the eight handouts had a mean grade 8 or less reading level. None of the handouts had a grade 5 or less reading level. Cronbach’s alpha was calculated to be 0.990, single measures ICC 0.931 and average class ICC 0.990, indicating extremely high internal reliability/consistency among the different readability tests. One-way ANOVA showed no evidence of a significant difference in parental satisfaction with the three handouts tested, despite their different grade reading levels (grades 7, 10 and 14) (P=0.24).

CONCLUSIONS:

While many readability formulas are available, the high internal reliability/consistency among them indicates that only one formula needs to be used to assess readability (eg, the Flesch-Kincaid Grade Level formula). Because there was no difference in parental satisfaction among three patient handouts that had widely different grade reading levels, studies should explore whether writing patient information materials explicitly to achieve low grade reading level scores is a worthwhile strategy.     

The PedsQL Brain Tumor Module: initial reliability and validity

BACKGROUND: Brain tumors (BT) are second only to acute lymphoblastic leukemia as the most prevalent form of pediatric cancer, with BT 5-year survival rates approaching 70%. With increased survival, quality of life has emerged as an essential health outcome. This investigation examines the internal consistency reliability and construct validity of the Pediatric Quality of Life Inventory (PedsQL) Brain Tumor Module. METHODS: The PedsQL 4.0 Generic Core Scales, PedsQL Multidimensional Fatigue Scale, and PedsQL Brain Tumor Module were administered to 99 families. The average age of the 56 boys and 43 girls was 9.76 years (range=2-18 years). The sample included children with tumors located in the posterior fossa/brainstem (N=62, 62.6%), supratentorial (N=15, 15.2%), and midline (N=22, 22.2%). Children were on treatment (N=46, 46.5%), off treatment<12 months (N=19, 19.2%), or off treatment>12 months/long-term survivor (N=34, 34.3%). Treatment included radiation (N=61, 61.6%), surgery (N=83, 83.8%), chemotherapy (N=87, 87.9%), and bone marrow transplant (N=5, 5.1%). RESULTS: Internal consistency reliability was demonstrated for the 24-item PedsQL Brain Tumor Module (average alpha=0.78-0.92, parent proxy-report, n=99; average alpha=0.76-0.87, child self-report, n=51). Construct validity for the PedsQL Brain Tumor Module was supported through an analysis of the intercorrelations with the Generic Core Scales and Fatigue Scale. CONCLUSIONS: The findings provide support for the measurement properties of the PedsQL Brain Tumor Module.     

Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland

OBJECTIVES: To assess the health-related quality-of-life (HRQOL) of children/adolescents with cystic fibrosis (CF) and compare HRQOL in children managed by cystic fibrosis outreach service (CFOS) with those treated in a cystic fibrosis center (CFC). To compare HRQOL of children with CF in Queensland with previously published HRQOL data from the United States and examine the relationship between HRQOL scores and pulmonary function. STUDY DESIGN: Participants were children/adolescents with CF and their parents managed by the Royal Children's Hospital Queensland at a CFC or CFOS. Two HRQOL surveys were used: PedsQL and Cystic Fibrosis Questionnaire (CFQ). RESULTS: There were 91 CFC and 71 CFOS participants with similar demographics. PedsQL total summary score was statistically higher in CFOS, P=.05. There was no significant difference in CFQ scores between groups. Queensland parents reported lower HRQOL for their children compared with US parents (P<.01) despite similar pulmonary function. Declining pulmonary function correlated with worse CFQ scores in adolescents, P<.05. CONCLUSIONS: Children living in regional Queensland reported as good as or slightly better HRQOL compared with children attending a CFC. Parent proxy HRQOL scores were generally low suggesting a reduced perception of HRQOL by parents for their children.     

Health‐related and diabetes‐related quality of life in Japanese children and adolescents with type 1 and type 2 diabetes

Background: The aim of this study was to assess (i) the health‐related quality of life (HR‐QOL) of primary, junior and high school children with type 1 and type 2 diabetes and to compare it with that of healthy school children; and (ii) to compare the diabetes‐related QOL (DR‐QOL) and the QOL of parents of children with diabetes, between type 1 and type 2 diabetes in Japan. Methods: Overall, 471 patients aged 9–18 years (368 with type 1 and 103 with type 2 diabetes) and their parents were involved. QOL was assessed using a self‐administered questionnaire. Results: The total score for HR‐QOL of primary and junior school children with type 1 diabetes was significantly higher than that of those with type 2 diabetes and healthy controls. However, there were no significant differences in high school children. Some subscales regarding HR‐QOL were significantly lower for children with type 2 diabetes than for children with type 1 diabetes or healthy controls. The DR‐QOL of children with type 1 and type 2 diabetes did not significantly differ. The Family Burden and Family Involvement were significantly greater in parents of children with type 1 diabetes. There were significantly positive correlations between HR‐QOL and DR‐QOL in both groups. In type 1 diabetes only, there were significant negative correlations between glycated hemoglobin and some subscales of the HR‐QOL and QOL of parents of children with diabetes, and weak positive correlation between glycated hemoglobin and Family Burden. Conclusions: The HR‐QOL of school children with type 1 diabetes was higher than that of those with type 2 diabetes and healthy school children. The QOL of school children with type 1 diabetes was not impaired.     

Propiedades psicométricas de la versión en castellano del Cuestionario Calidad de Vida Pediátrica Módulo de Impacto Familiar (PedsQL FIM)

IntroductionThis study analysed the psychometric properties of the Spanish version of the Pediatric Quality of Life Questionnaire Family Impact Module (PedsQL FIM) in the Argentinian population.Patients and methodsThe sample included 232 caregivers, of who 108 were parents of children with chronic diseases (mean, 9.54; standard deviation [SD], 4.43) and 124 parents of children in the general population (mean, 12.37; SD, 4.6).ResultsWe assessed the validity of the instrument with the known-groups method, finding significant differences between the case and control groups in the overall and subscale scores (P < .01). We also assessed test validity by means of exploratory factor analysis, which yielded an 8-factor model that explained 74.03% of the variance. We assessed reliability with the Cronbach alpha and found a high internal consistency (α=.95).ConclusionThe PedsQL module proved to be a valid and reliable tool to assess the impact of a chronic paediatric condition on caregiver quality of life and family functioning.     

How well does the Canadian haemophilia Outcomes‐Kids' Life Assessment Tool (CHO‐KLAT) measure the quality of life of boys with haemophilia?

BACKGROUND: It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease-specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT). PROCEDURE: A 79-item version of the CHO-KLAT was administered to 52 children. A detailed item analysis was conducted to shorten the CHO-KLAT. The reliability of the revised version was assessed using intraclass correlation coefficients. Validity was assessed by comparing it to the PedsQL and the HaemoQoL. RESULTS: The item analysis resulted in the retention of 35 strongly performing items (CHO-KLAT(35)). These items were aggregated into the CHO-KLAT(35) summary score. Repeated measures reliability of the CHO-KLAT(35) was 0.74 for children and 0.83 for parents, and the child-parent concordance was 0.75. The validity of the CHO-KLAT(35) was confirmed by a correlation of 0.78 with the Haemo-QoL and of 0.59 with the PedsQL. CONCLUSIONS: The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.     

A questionnaire for screening a broad range of DSM-defined anxiety disorder symptoms in clinically referred children and adolescents

OBJECTIVE: To examine the reliability and validity of the 66-item Screen for Child Anxiety Related Emotional Disorders-Revised (SCARED-R), a questionnaire for measuring a broad range of DSM-defined anxiety disorder symptoms, in a sample of clinically referred youths. METHOD: The SCARED-R was administered to children/adolescents and their parents during the standard intake assessment. SCARED-R scores were compared against Child Behavior Checklist (CBCL) scores, DSM-IV axis I classifications, and global assessment of functioning (GAF) ratings. RESULTS: In this sample of clinically referred youths, the SCARED-R was reliable in terms of internal consistency and showed reasonable child-parent agreement. Furthermore, SCARED-R scores correlated significantly with CBCL internalising but not with externalising. Within the group of children with anxiety disorders, SCARED-R scores were also negatively associated with children's daily functioning as rated on the GAF scale. Finally, SCARED-R scores had satisfactory discriminant validity (both between anxiety disorders and other problems and within anxiety disorders), and appeared to have reasonable value for predicting specific anxiety disorders. CONCLUSION: The SCARED-R is a valuable addition to the arsenal of questionnaires that are used for the assessment of anxiety in youths.     

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

Objective

The 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.

Pediatric Functional Constipation Questionnaire-Parent Report (PedFCQuest-PR): development and validation

ObjectiveDeveloping and validating a disease-specific instrument in the Brazilian Portuguese language to assess the Health-Related Quality of Life of children with functional constipation, applied to parents/caregivers.MethodsThe process of developing the questionnaire was carried out in the following steps: items generation concerning functional constipation; elaboration of the preliminary questionnaire; assessment by health professionals; identifying problems or inconsistencies by the researchers; improvement of the questions; obtaining a final questionnaire named Pediatric Functional Constipation Questionnaire-Parent Form (PedFCQuest-PR) with 26 questions divided into four domains. Responses options use a Likert scale based on the events of the last four weeks. The process of validation was an observational, cross-sectional study in a sample of 87 parents/caregivers of children from 5 to 15 years of age diagnosed with Functional constipation according to the Rome IV Criteria. The questionnaire was applied simultaneously to the Pediatric Quality of Life Inventory 4.0 (PedsQL TM 4.0) as a control.ResultsThe questionnaire validation included 87 parents/caregivers. The children's median age was 8.2 years, with a long time of constipation symptoms associated with fecal incontinence in approximately two-thirds. Internal consistency reliability for the Total Scale Score of PedFCQuest-PR by Coefficient Alpha of Cronbach score was 0.86. Convergent and divergent validity of PedFCQuest-PR was demonstrated by correlating the domains of both questionnaires.ConclusionThis study provides evidence that PedFCQuest-PR is a reliable instrument. The results showed a high degree of internal consistency and validity of the instrument for future applications.     

Health-related quality of life in overweight and nonoverweight black and white adolescents

OBJECTIVES: To assess the impact of obesity on quality of life (QOL) in black and white adolescents. STUDY DESIGN: One hundred ten overweight (body mass index [BMI], 41.7 +/- 8.9 kg/m2) and 34 nonoverweight adolescents (BMI, 20.6 +/- 2.9 kg/m2) and their parents completed measures of QOL. RESULTS: Overweight was associated with poorer adolescent-reported QOL and parent reports of their children's QOL. Examining groups by weight status and race, overweight whites reported the greatest impairment on Social/Interpersonal, Self-Esteem, and Physical Appearance QOL (all P < .01), whereas parents of overweight blacks reported the poorest General Health Perceptions scores regarding their children. Interactions between BMI z-score and race were detected for Social/Interpersonal, Self-esteem, Daily Living, Self-Efficacy, Self-regard, and Physical Appearance QOL (all P < .05): Higher BMI in whites was associated with greater impairments in QOL than in blacks. Parents reported similar relations for their children. CONCLUSIONS: According to adolescent and parent reports, overweight is associated with poorer QOL in adolescence, regardless of race; however, compared with overweight white adolescents, blacks report less impairment in QOL. Future research is required to determine whether differences in QOL are predictive of treatment success.     

Quality of Life Measurement for Children with Life-Threatening Conditions: Limitations and a New Framework

About 500,000 children are coping with life-threatening conditions (LTC) in the United States every year. Different service programs such as an integrated pediatric palliative care program may benefit health-related quality of life (HRQOL) which is a great concern of this children population and their families. However, evidence is limited about the appropriate HRQOL instruments for use. This study aims to validate psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life (PedsQL) 4.0, for children with LTC. The parent proxy-report was used. We conducted a telephone interview to collect data of 257 parents whose children had LTC and were enrolled in Medicaid. We used standard psychometric methods to validate the PedsQL: scale reliability, item-domain convergent/discriminant validity, and known-groups validity. We also conducted Rasch analysis to assess construct validity. Results suggest that the PedsQL did not demonstrate valid psychometric properties for measuring HRQOL in this population. Rasch analysis suggests that the contents of the items in all domains did not appropriately cover the latent HRQOL of children with LTC. We document several methodological challenges in using a generic instrument to measuring HRQOL and propose a new framework to improve HRQOL measures for children with LTC. The strategies include revising the content of existing items, designing new items, adding important themes (e.g., financial challenge), and applying computerized adaptive test to better select appropriate items for individual children with LTC.