title: PedsQL™ sickle cell disease module: feasibility, reliability, and validity.
abstract: BACKGROUND
  Sickle 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.
  
  
  METHODS
  The 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.
  
  
  RESULTS
  The 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.
  
  
  CONCLUSIONS
  The 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.
authors: 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
authors: Julie A
authors: JA
authors: Panepinto
authors: Sylvia
authors: S
authors: Torres
authors: Cristiane B
authors: CB
authors: Bendo
authors: Timothy L
authors: TL
authors: McCavit
authors: Bogdan
authors: B
authors: Dinu
authors: Sandra
authors: S
authors: Sherman-Bien
authors: Christy
authors: C
authors: Bemrich-Stolz
authors: James W
authors: JW
authors: Varni
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D057566:Self Report; D012680:Sensitivity and Specificity