• Julie A Panepinto, Sylvia Torres, Cristiane B Bendo, Timothy L McCavit, Bogdan Dinu, Sandra Sherman-Bien, Christy Bemrich-Stolz, and James W Varni.
• Department of Pediatrics, Children's Hospital of Wisconsin of the Children's Research Institute/Medical College of Wisconsin, Hematology/Oncology/Bone Marrow Transplantation, Milwaukee, Wisconsin 53226, USA. jpanepin@mcw.edu
• Pediatr Blood Cancer. 2013 Aug 1;60(8):1338-44.

BackgroundSickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso-occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years.ProcedureThe 43-item PedsQL™ SCD Module was completed in a multisite study by 243 pediatric patients with SCD and 313 parents. Participants also completed the PedsQL™ 4.0 Generic Core Scales and PedsQL™ Multidimensional Fatigue Scale.ResultsThe PedsQL™ SCD Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.95; parent proxy-report α = 0.97), and good reliability for the nine individual scales (patient self-report α = 0.69-0.90; parent proxy-report α = 0.83-0.97). Intercorrelations with the PedsQL™ Generic Core Scales and PedsQL™ Multidimensional Fatigue Scales were medium (0.30) to large (0.50) range, supporting construct validity. PedsQL™ SCD Module Scale Scores were generally worse for patients with severe versus mild disease. Confirmatory factor analysis demonstrated an acceptable to excellent model fit.ConclusionsThe PedsQL™ SCD Module demonstrated acceptable measurement properties. The PedsQL™ SCD Module may be utilized in the evaluation of SCD-specific health-related quality of life in clinical research and practice. In conjunction with the PedsQL™ Generic Core Scales and the PedsQL™ Multidimensional Fatigue Scale, the PedsQL™ SCD Module will facilitate the understanding of the health and well-being of children with SCD.Copyright © 2013 Wiley Periodicals, Inc.

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