Article

The Performance of the PedsQL Generic Core Scales in Children With Sickle Cell Disease

Department of Pediatrics, Hematology/Oncology/Bone Marrow Transplantation, Children's Hospital of Wisconsin of the Children's Research Institute, Milwaukee, WI 53226, USA.
Journal of Pediatric Hematology/Oncology (Impact Factor: 0.96). 10/2008; 30(9):666-73. DOI: 10.1097/MPH.0b013e31817e4a44
Source: PubMed

ABSTRACT The objective of this study was to determine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory generic core scales (PedsQL questionnaire) in children with sickle cell disease. This was a cross-sectional study of children from an urban hospital-based sickle cell disease clinic and an urban primary care clinic. The study participants were children of ages 2 to 18 years who presented to clinic for a routine visit. Health-related quality of life (HRQL) was the main outcome. HRQL of children with sickle cell disease were compared with children without disease to test validity. Missing items were used to determine feasibility and Cronbach's alpha was used to determine reliability. Parents of 178 children (104 with sickle cell disease and 74 without disease) and 118 children (78 with sickle cell disease and 40 without disease) completed HRQL questionnaires. The PedsQL questionnaire was feasible and reliable. The parent proxy and child self-report questionnaire differentiated between children with and without sickle cell disease. The parent proxy-report differentiated well between children with mild and severe sickle cell disease. The questionnaire performed well in children with sickle cell disease and is a feasible, reliable, and valid tool to measure HRQL in children with sickle cell disease.

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    • "Construct validity showed a six-factor structure. The results are in line with a study by Panepinto et al. (2008) in which the authors also reported a six-factor structure. However, the six factors were slightly different from what this study has concluded. "
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    ABSTRACT: Adolescence is the potential period for growth and optimal functioning, but developmental issues like time of transition from childhood to adulthood will create stress and affect the adolescent's quality of life (QOL). However, there is a lack of research tool for measuring adolescent's QOL in Malaysia. The aim of the study was to determine the validity and reliability of the self-report Malay version of the pediatric QOL (PedsQL™) 4.0 Generic Core Scales in assessing the QOL of Malaysian adolescents. A cross-sectional study design using the 23-item self-report Malay version of the PedsQL 4.0 Generic Core Scales was administered on a convenient cluster sampling (n = 297 adolescent) from a secondary school. The internal consistency reliability had Cronbach's α values ranging from .70 to .89. Factor analysis reported a six-factor structure via principal axis factor analysis. In conclusion, the self-report Malay version of the pediatric QOL 4.0 Generic Core Scales is a reliable and valid tool to measure the QOL of multiethnic Malaysian adolescents.
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    • "We recruited a convenience sample of parents of children with and without sickle cell disease at both clinics as part of a larger study of the HRQL of children. [13,25] There were 145 parents of children with sickle cell disease approached for the study. Of those, 133 agreed to participate and 20 refused for varying reasons such as "not enough time". "
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    ABSTRACT: Caring for a child with a chronic condition, such as sickle cell disease, can have a significant impact on parents and families. In order to provide comprehensive care and support to these families, psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL Family Impact Module in populations of children with and without sickle cell disease. In addition, we sought to determine the correlation between parent's well being and their proxy report of their child's health-related quality of life (HRQL). We conducted a cross-sectional study of parents of children with and without sickle cell disease who presented to an urban hospital-based sickle cell disease clinic and an urban primary care clinic. We assessed the HRQL and family functioning of both groups of parents utilizing the PedsQL Family Impact Module. The reliability, validity and factor structure of the instrument were determined and scores from the instrument were correlated with scores from parent-proxy report of their child's HRQL using the PedsQL 4.0 Generic Core Scales. Parents of 170 children completed the module (97 parents of children with sickle cell disease and 73 parents of children without sickle cell disease). The Family Impact Module had high ceiling effects but was reliable (Cronbach's alpha > 0.80 in all scales). The empirical factor structure was generally consistent with the theoretical factor structure and supported construct validity. The Family Impact Module discriminated between parents of children with severe sickle cell disease from parents of children with mild disease or no disease in the areas of communication and worry. There were no significant differences across any of the subscales between parents of children with mild sickle cell disease and those with no disease. Parents with higher scores, representing better HRQL and family functioning, generally reported higher HRQL scores for their children. The PedsQL Family Impact module was reliable, however it displayed large ceiling effects and did not discriminate well between parents of children with and without sickle cell disease. Future research to evaluate the psychometric properties of the Family Impact Module for parents of healthy children may be helpful.
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