The Pediatric Quality of Life Inventory™ in children with heart disease

Uzark, Karen; Jones, Karen; Burwinkle, Tasha M.; Varni, James W.

doi:10.1016/s1058-9813(03)00087-0

Cited by 177 publications

(242 citation statements)

References 26 publications

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“…The generic core scales contain 23 items grouped into four scales-Physical Health Summary Score (eight items), Emotional (five items), Social (five items), and School (five items)-plus composite scales for a Total Scale Score (23 items) and a Psychosocial Health Summary Score (the sum of Emotional, Social, and Study/Work functioning, 15 items). The cancer module contains 27 items, grouped into eight scales-Pain and Hurt (two items); Nausea (five items); Procedural Anxiety (three items); Treatment Anxiety (three items); Worry (three items); Cognitive Problems (five items); Perceived Physical Appearance (three items); and Communication (three items) [14][15][16][17][18][19][20].…”

Section: The Pedsql Instrumentsmentioning

confidence: 99%

“…The validity and reliability of the PedsQL has been demonstrated in various paediatric populations e.g. cancer [17], diabetes [18], and heart disease [19]. There are parallel child self-report and parent proxy-report formats, and age-specific forms differing in developmentally appropriate language for ages 2-4 years (toddler, proxy-report only), 5-7 years (young child), 8-12 years (child), and 13-18 years (adolescent) [14][15][16]20].…”

Section: Introductionmentioning

confidence: 99%

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Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder

2009

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Purpose To validate two health-related quality of life (HRQOL) measures, the PedsQL Generic Core and Cancer Module adolescent forms (13-18 years), after modification for 16-25-year-old adolescents and young adults (AYA) with cancer or a blood disorder. Methods AYA patients and nominated proxies were recruited from three Sydney hospitals. Modified forms were administered by telephone or in clinics/wards. Analyses included correlations, factor analysis, and analysis of variance of known-groups (defined by the Memorial Symptom Assessment Scale). Results Eighty-eight patients and 79 proxies completed questionnaires. Factor structures consistent with those of the unmodified forms confirmed construct validity. Cronbach's alpha ranged 0.81-0.98. Inter-scale correlations were as hypothesized, confirming discriminant validity. Statistically significant differences between groups with mild, moderate, and severe symptoms (P \ 0.05) confirmed clinical validity.Conclusion These modified forms provide reliable and valid measures of HRQOL in AYA with cancer or a blood disorder, suitable for clinical trials, research, and practice.

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Section: The Pedsql Instrumentsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder

2009

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“…6,9,28,29 Furthermore, the majority of HRQOL deficits were identified in physical function and role function domains. [31][32][33][34][35] The neurodevelopmental studies demonstrate normal IQ score but overall performance scores lower than that of the general population. The subgroup of those with HLHS were noted to have a higher risk for neurodevelopmental deficits associated with prolonged periods of DHCA, congenital brain abnormalities, or hypoxic-ischemic insult.…”

Section: Discussionmentioning

confidence: 99%

“…Some studies indicate deficits in physical function and role function domains, [31][32][33][34][35] whereas others show no significant difference compared with the general population. 24,32 Few studies have addressed HRQOL or QOL in only the SV Fontan patients.…”

Section: Hrqol and Qol Outcomesmentioning

confidence: 99%

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Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

et al. 2007

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Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade The advancements in surgical technique and perioperative care have significantly improved the survival of children with single ventricle (SV) congenital heart disease (CHD) over the past decade. The population who have undergone the Fontan operation are growing into adulthood and facing many unique challenges. Past research has focused on functional and neurodevelopmental outcomes with inferences made to health-related quality of life (HRQOL). With the population who have undergone the Fontan operation surviving into adulthood, little research has been directed toward the self-report of HRQOL in adolescents and young adults after surgical palliation. Questions still remain on how these patients will transition into adulthood and whether they will live normal productive lives. This article reviews the literature related to HRQOL in the SV subgroup of CHD. In addition, an overview of newly developed disease-specific HRQOL instruments is presented as well as limitations and future research in HRQOL of the SV Fontan population.

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Health-Related Quality of Life of Severely Obese Children and Adolescents

Schwimmer

Burwinkle²,

Varni³

2003

JAMA

1,531

1,100

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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 MeasuresChild 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 (PϽ.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; PϽ.01), social functioning (r=−0.347; PϽ.001), and psychosocial functioning (r=−0.209; P = .03). ConclusionsSeverely 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.

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The Pediatric Quality of Life Inventory™ in children with heart disease

Cited by 177 publications

References 26 publications

Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder

Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder

Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

Health-Related Quality of Life of Severely Obese Children and Adolescents

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