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James W Varni

Publications and source records attributed to James W Varni.

At least 37 records · Page 2Linked to original sources

The relationship between health-related quality of life, pain, and coping strategies in juvenile arthritis--a one year prospective study.

The aim of this 12-month prospective study was to compare reports describing the health-related quality of life (HRQL) of children with Juvenile idiopathic arthritis (JIA) obtained from parents and children, to investigate the extent to which the children's HRQL changed over a 12-month period, and to describe the relationship between children's HRQL, and their experience of pain and use of pain coping strategies. Fifty-four children aged 8-18 years with JIA and their parents completed standard questionnaires assessing children's HRQL, pain intensity, and pain coping strategies at baseline, 6 months, and 12 months. In general, children reported that their HRQL was better than was reported by parents. Both informants described children's HRQL as being very stable over the 12 months of the study. Consistent with the Biobehavioural Model of Pain, there was a significant negative relationship between children's HRQL and their experience of pain. However, there was little evidence that pain coping strategies mediated the relationship between children's experience of pain and their HRQL.

Adaptation, Psychological↗

Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: report of a multisite randomized trial.

Mothers of children with cancer experience significant distress associated with their children's diagnosis and treatment. The efficacy of problem-solving skills training (PSST), a cognitive-behavioral intervention based on problem-solving therapy, was assessed among 430 English- and Spanish-speaking mothers of recently diagnosed patients. Participants were randomized to usual psychosocial care (UPC; n=213) or UPC plus 8 sessions of PSST (PSST; n=217). Compared with UPC mothers, PSST mothers reported significantly enhanced problem-solving skills and significantly decreased negative affectivity. Although effects were largest immediately after PSST, several differences in problem-solving skills and distress levels persisted to the 3-month follow-up. In general, efficacy for Spanish-speaking mothers exceeded that for English-speaking mothers. Findings also suggest young, single mothers profit most from PSST.

Adaptation, Psychological↗

The PedsQL: reliability and validity of the short-form generic core scales and Asthma Module.

OBJECTIVE: 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. METHODS: The PedsQL 4.0 SF15 and the PedsQL 3.0 SF22 Asthma Module were administered by telephone to 125 adolescents (aged 12-18) and 338 parents of children with asthma (aged 2-11). Healthy (n = 451) and chronically ill (n = 422) children, matched by age, respondent status, and ethnicity to the asthma sample, provided data for selected validity tests. RESULTS: The Total Score from the PedsQL 4.0 SF15 and the Asthma Symptoms scale and Treatment Problems scale from the PedsQL 3.0 SF22 Asthma Module were sufficiently reliable for group comparisons (alpha > or = 0.70 across all age groups) in the asthma sample. The PedsQL 4.0 SF15 and the PedsQL 3.0 SF22 Asthma Module were able to distinguish between children of different clinical status and correlated as expected with measures of productivity and family functioning in the asthma sample. The psychometric properties of the PedsQL 4.0 SF15 were generally comparable to those of the original instrument. CONCLUSION: The Total Score of the PedsQL 4.0 SF15 and the Asthma Symptoms scale of the PedsQL 3.0 SF22 Asthma Module demonstrated the best reliability and validity and should be suitable for group-level comparisons of generic and asthma-specific HRQoL in clinical research studies of children with asthma.

Adolescent↗

Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children.

The aim of the study was to determine whether pediatric patients with cerebral palsy (CP; 24.3% hemiplegic, 30.4% diplegic, 38.5% quadriplegic) can self-report their health-related quality of life (HRQOL) with the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) Generic Core Scales. The PedsQL was administered to 148 families (84 males, 64 females; mean 10y, SD 3y 9mo, range 5 to 18y) recruited from a children's hospital clinic and state medical therapy clinics. Sixty-nine children (47%) were able to self-report. Children with CP self-reported a significantly lower HRQOL (mean 65.9) than healthy children (mean 83.8). Children with CP self-reported a similar HRQOL to pediatric cancer patients receiving treatment (mean 68.9). Children diagnosed with quadriplegia (mean 49.4) self-reported more impaired HRQOL than children with diplegia (mean 69.1) and hemiplegia (mean 72.4). Parent-child concordance was lowest for emotional functioning. Providers and parents should obtain the children's HRQOL perceptions whenever possible.

Adolescent↗

Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia.

BACKGROUND: 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. METHODS: 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 > or = 12 months. RESULTS: 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 > or = 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 > or = 12 months. CONCLUSIONS: Pediatric patients and survivors of BT experienced more fatigue and HRQOL problems than patients with ALL, and HRQOL differed by treatment status.

Adolescent↗

The PedsQL Family Impact Module: preliminary reliability and validity.

BACKGROUND: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The newly developed PedsQL Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships. METHODS: The 36-item PedsQL Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families. RESULTS: Internal consistency reliability was demonstrated for the PedsQL Family Impact Module Total Scale Score (alpha = 0.97), Parent HRQOL Summary Score (alpha = 0.96), Family Functioning Summary Score (alpha = 0.90), and Module Scales (average alpha = 0.90, range = 0.82 - 0.97). The PedsQL Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home. CONCLUSIONS: The results demonstrate the preliminary reliability and validity of the PedsQL Family Impact Module in families with children with complex chronic health conditions. The PedsQL Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

Activities of Daily Living↗

Health-related quality of life and depressive symptoms in children with suspected sleep-disordered breathing.

STUDY OBJECTIVES: 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. DESIGN: We studied a group of 85 clinically referred children, aged 8 to 12 years, with snoring and suspected SDB and 35 asymptomatic children (controls). All children completed validated questionnaires for the presence of depression (Children's Depression Inventory) and for health-related quality of life (PedsQL), and parents completed the Parent Report version of the PedsQL. Children referred to the Sleep Medicine Center for sleep-disordered breathing were further subdivided according to their body mass index > 95% for age and sex (n = 44) and with BMI < 95% for age and sex as ClinN1 (n = 41). RESULTS: Parentally reported quality of life and physical health differed between obese and nonobese children. However, both groups with SDB had more-impaired quality of life and depressive symptoms than did controls. CONCLUSIONS: Children with suspected SDB, regardless of the severity of apnea-hypopnea index or the presence of obesity, had more impairments in quality of life and depressive symptoms than did children who did not snore.

Adolescent↗

Health-related quality of life as a predictor of pediatric healthcare costs: a two-year prospective cohort analysis.

BACKGROUND: The objective of this study was to test the primary hypothesis that parent proxy-report of pediatric health-related quality of life (HRQL) would prospectively predict pediatric healthcare costs over a two-year period. The exploratory hypothesis tested anticipated that a relatively small group of children would account for a disproportionately large percent of healthcare costs. METHODS: 317 children (157 girls) ages 2 to 18 years, members of a managed care health plan with prospective payment participated in a two-year prospective longitudinal study. At Time 1, parents reported child HRQL using the Pediatric Quality of Life Inventory (PedsQL 4.0) Generic Core Scales, and chronic health condition status. Costs, based on health plan utilization claims and encounters, were derived for 6, 12, and 24 months. RESULTS: In multiple linear regression equations, Time 1 parent proxy-reported HRQL prospectively accounted for significant variance in healthcare costs at 6, 12, and 24 months. Adjusted regression models that included both HRQL scores and chronic health condition status accounted for 10.1%, 14.4%, and 21.2% of the variance in healthcare costs at 6, 12, and 24 months. Parent proxy-reported HRQL and chronic health condition status together defined a 'high risk' group, constituting 8.7% of the sample and accounting for 37.4%, 59.2%, and 62% of healthcare costs at 6, 12, and 24 months. The high risk group's per member per month healthcare costs were, on average, 12 times that of other enrollees' at 24 months. CONCLUSIONS: While these findings should be further tested in a larger sample, our data suggest that parent proxy-reported HRQL can be used to prospectively predict healthcare costs. When combined with chronic health condition status, parent proxy-reported HRQL can identify an at risk group of children as candidates for proactive care coordination.

Adolescent↗

The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module.

The PedsQL is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2-18. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The PedsQL3.0 Asthma Module was designed to measure pediatric asthma-specific HRQOL. The PedsQL was administered to 529 families. Internal consistency reliability was demonstrated for the PedsQL 4.0 Total Score (alpha = 0.90 child, 0.91 parent report) and Asthma Module (average alpha = 0.71 child, 0.86 parent report). The PedsQL 4.0 distinguished between healthy children and children with asthma. The validity of the PedsQL Asthma Module was demonstrated through intercorrelations with a previously standardized asthma disease- specific instrument. Responsiveness was demonstrated through patient change over time as a result of clinical intervention. The results demonstrate the reliability, validity, and responsiveness of the PedsQL required for an outcome measure in pediatric asthma clinical trials and research.

Adolescent↗

Evaluation of the built environment at a children's convalescent hospital: development of the Pediatric Quality of Life Inventory parent and staff satisfaction measures for pediatric health care facilities.

In preparation for the design, construction, and postoccupancy evaluation of a new Children's Convalescent Hospital, focus groups were conducted and measurement instruments were developed to quantify and characterize parent and staff satisfaction with the built environment of the existing pediatric health care facility, a 30-year-old, 59-bed, long-term, skilled nursing facility dedicated to the care of medically fragile children with complex chronic conditions. The measurement instruments were designed in close collaboration with parents, staff, and senior management involved with the existing and planned facility. The objectives of the study were to develop pediatric measurement instruments that measured the following: (1) parent and staff satisfaction with the built environment of the existing pediatric health care facility, (2) parent satisfaction with the health care services provided to their child, and (3) staff satisfaction with their coworker relationships. The newly developed Pediatric Quality of Life Inventory scales demonstrated internal consistency reliability (average alpha = 0.92 parent report, 0.93 staff report) and initial construct validity. As anticipated, parents and staff were not satisfied with the existing facility, providing detailed qualitative and quantitative data input to the design of the planned facility and a baseline for postoccupancy evaluation of the new facility. Consistent with the a priori hypotheses, higher parent satisfaction with the built environment structure and aesthetics was associated with higher parent satisfaction with health care services (r =.54, p <.01; r =.59, p <.01, respectively). Higher staff satisfaction with the built environment structure and aesthetics was associated with higher coworker relationship satisfaction (r =.53; p <.001; r =.51; p <.01, respectively). The implications of the findings for the architectural design and evaluation of pediatric health care facilities are discussed.

Attitude of Health Personnel↗

The PedsQL in pediatric cancer pain: a prospective longitudinal analysis of pain and emotional distress.

The objective of this prospective study was to investigate the cross-sectional and longitudinal associations between pain and emotional distress in children and adolescents with cancer as measured by the Pediatric Quality of Life Inventory (PedsQL) Emotional Functioning and Pain Scales. The PedsQL 1.0 Generic Core Scales are multidimensional scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 1.0 Cancer Module was designed to measure pediatric cancer-specific health-related quality of life. The PedsQL Generic Core Scales, Emotional Functioning Scale and Cancer Module Pain Scale, were administered to 69 children and 59 adolescents and their parents at Time 1 and Time 2, which was 6 months on average after Time 1. Prospective hierarchical multiple regression analyses supported a longitudinal predictive model with Time 1 pain predicting Time 2 pain and Time 1 emotional distress predicting Time 2 emotional distress, respectively. Time 1 emotional distress did not predict Time 2 pain, and Time 1 pain did not predict Time 2 emotional distress. The results demonstrate that pediatric cancer pain and emotional distress, although associated cross-sectionally, are differentially predictive in prospective longitudinal analyses. These results suggest that both pain and emotional distress should be targeted for treatment interventions concurrently to enhance long-term health-related quality of life of the pediatric patient with cancer.

Adolescent↗

The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity.

OBJECTIVE: . The PedsQL (Pediatric Quality of Life Inventory) is a modular instrument designed to measure health related quality of life (HRQOL) in children and adolescents ages 2-18 years. The recently developed 18-item PedsQL Multidimensional Fatigue Scale was designed to measure fatigue in pediatric patients and comprises the General Fatigue Scale (6 items), Sleep/Rest Fatigue Scale (6 items), and Cognitive Fatigue Scale (6 items). The PedsQL 4.0 Generic Core Scales were developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 3.0 Rheumatology Module was designed to measure pediatric rheumatology-specific HRQOL. Methods. The PedsQL Multidimensional Fatigue Scale, Generic Core Scales, and Rheumatology Module were administered to 163 children and 154 parents (183 families accrued overall) recruited from a pediatric rheumatology clinic. Results. Internal consistency reliability for the PedsQL Multidimensional Fatigue Scale Total Score (a = 0.95 child, 0.95 parent report), General Fatigue Scale (a = 0.93 child, 0.92 parent), Sleep/Rest Fatigue Scale (a = 0.88 child, 0.90 parent), and Cognitive Fatigue Scale (a = 0.93 child, 0.96 parent) were excellent for group and individual comparisons. The validity of the PedsQL Multidimensional Fatigue Scale was confirmed through hypothesized intercorrelations with dimensions of generic and rheumatology-specific HRQOL. The PedsQL Multidimensional Fatigue Scale distinguished between healthy children and children with rheumatic diseases as a group, and was associated with greater disease severity. Children with fibromyalgia manifested greater fatigue than children with other rheumatic diseases. CONCLUSION: The results confirm the initial reliability and validity of the PedsQL Multidimensional Fatigue Scale in pediatric rheumatology.

Activities of Daily Living↗

Health-related quality of life of severely obese children and adolescents.

CONTEXT: One in 7 US children and adolescents is obese, yet little is known about their health-related quality of life (QOL). OBJECTIVE: To examine the health-related QOL of obese children and adolescents compared with children and adolescents who are healthy or those diagnosed as having cancer. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional study of 106 children and adolescents (57 males) between the ages of 5 and 18 years (mean [SD], 12.1 [3] years), who had been referred to an academic children's hospital for evaluation of obesity between January and June 2002. Children and adolescents had a mean (SD) body mass index (BMI) of 34.7 (9.3) and BMI z score of 2.6 (0.5). MAIN OUTCOME MEASURES: Child self-report and parent proxy report using a pediatric QOL inventory generic core scale (range, 0-100). The inventory was administered by an interviewer for children aged 5 through 7 years. Scores were compared with previously published scores for healthy children and adolescents and children and adolescents diagnosed as having cancer. RESULTS: Compared with healthy children and adolescents, obese children and adolescents reported significantly (P<.001) lower health-related QOL in all domains (mean [SD] total score, 67 [16.3] for obese children and adolescents; 83 [14.8] for healthy children and adolescents). Obese children and adolescents were more likely to have impaired health-related QOL than healthy children and adolescents (odds ratio [OR], 5.5; 95% confidence interval [CI], 3.4-8.7) and were similar to children and adolescents diagnosed as having cancer (OR, 1.3; 95% CI, 0.8-2.3). Children and adolescents with obstructive sleep apnea reported a significantly lower health-related QOL total score (mean [SD], 53.8 [13.3]) than obese children and adolescents without obstructive sleep apnea (mean [SD], 67.9 [16.2]). For parent proxy report, the child or adolescent's BMI z score was significantly inversely correlated with total score (r = -0.246; P =.01), physical functioning (r = -0.263; P<.01), social functioning (r = -0.347; P<.001), and psychosocial functioning (r = -0.209; P =.03). CONCLUSIONS: Severely obese children and adolescents have lower health-related QOL than children and adolescents who are healthy and similar QOL as those diagnosed as having cancer. Physicians, parents, and teachers need to be informed of the risk for impaired health-related QOL among obese children and adolescents to target interventions that could enhance health outcomes.

Adolescent↗

The effects of dyadic strength and coping styles on psychological distress in couples faced with prostate cancer.

Dyadic adjustment and coping styles have been shown to predict levels of psychological distress following cancer diagnoses. This study examined the relationship between coping and distress in couples faced with prostate cancer, considering dyadic functioning as a third variable that potentially moderated or mediated the relationship. To investigate its influence on the success of patients' and spouses' coping efforts, both moderational and mediational models were tested using couples' composite dyadic adjustment scores. Only the moderational model was supported for patients: dyadic strength moderated the effects of avoidant coping and intrusive thinking on mood disturbance. Despite maladaptive coping, patients that were members of stronger dyads reported less distress than those in more dysfunctional relationships. Findings suggest that the relationship between coping and distress depends on the quality of dyadic functioning. Being part of a strong dyad may serve as a buffering factor, implying the need for psychosocial intervention for couples in maladjusted relationships.

Adaptation, Psychological↗

Parents' perceptions of pediatric primary care quality: effects of race/ethnicity, language, and access.

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.

Attitude to Health↗

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.

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 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. RESEARCH DESIGN AND METHODS: The PedsQL Generic Core Scales and Diabetes Module were administered to 300 pediatric patients with type 1 or type 2 diabetes and 308 parents. RESULTS: 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. CONCLUSIONS: 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.

Adolescent↗

The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module.

BACKGROUND: 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 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 Multidimensional Fatigue Scale was designed to measure fatigue in pediatric patients. The PedsQL 3.0 Cancer Module was designed to measure pediatric cancer specific HRQOL. METHODS: The PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module were administered to 339 families (220 child self-reports; 337 parent proxy-reports). RESULTS: Internal consistency reliability for the PedsQL Generic Core Total Scale Score (alpha = 0.88 child, 0.93 parent report), Multidimensional Fatigue Total Scale Score (alpha = 0.89 child, 0.92 parent report) and most Cancer Module Scales (average alpha = 0.72 child, 0.87 parent report) demonstrated reliability acceptable for group comparisons. Validity was demonstrated using the known-groups method. The PedsQL distinguished between healthy children and children with cancer as a group, and among children on-treatment versus off-treatment. The validity of the PedsQL Multidimensional Fatigue Scale was further demonstrated through hypothesized intercorrelations with dimensions of generic and cancer specific HRQOL. CONCLUSIONS: The results demonstrate the reliability and validity of the PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module in pediatric cancer. The PedsQL may be utilized as an outcome measure in clinical trials, research, and clinical practice.

Activities of Daily Living↗

The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module.

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 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Adolescent↗