PedsQL™ sickle cell disease module: Feasibility, reliability, and validity

Julie A. Panepinto, Sylvia Torres, Cristiane B. Bendo, Timothy L. Mccavit, Bogdan Dinu, Sandra Sherman-Bien, Christy Bemrich-Stolz, James W. Varni

Research output: Contribution to journalArticlepeer-review

114 Scopus citations


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. Procedure: 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.

Original languageEnglish (US)
Pages (from-to)1338-1344
Number of pages7
JournalPediatric Blood and Cancer
Issue number8
StatePublished - Aug 2013


  • Children
  • Health-related quality of life
  • Patient-reported outcomes
  • Pediatrics
  • PedsQL
  • Sickle cell disease

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology


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