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PedsQL™ sickle cell disease module: feasibility, reliability, and validity.

Julie A Panepinto1, Sylvia Torres, Cristiane B Bendo

  • 1Department 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

Pediatric Blood & Cancer
|February 27, 2013
PubMed
Summary

The new PedsQL™ Sickle Cell Disease (SCD) Module shows good reliability and validity for measuring health-related quality of life in children with SCD. This tool aids in understanding the well-being of pediatric patients with SCD.

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Area of Science:

  • Pediatric Health
  • Quality of Life Measurement
  • Chronic Disease Management

Background:

  • Sickle Cell Disease (SCD) is a serious inherited disorder causing severe pain, frequent hospitalizations, and reduced lifespan.
  • Assessing the health-related quality of life (HRQoL) in children with SCD is crucial for effective management.
  • Existing tools may not fully capture the unique challenges faced by pediatric SCD patients.

Purpose of the Study:

  • To evaluate the initial measurement properties of the PedsQL™ SCD Module.
  • To assess its reliability and validity for pediatric self-report (ages 5-18) and parent proxy-report (ages 2-18).

Main Methods:

  • A multisite study involving 243 pediatric patients with SCD and 313 parents.
  • Participants completed the 43-item PedsQL™ SCD Module, PedsQL™ 4.0 Generic Core Scales, and PedsQL™ Multidimensional Fatigue Scale.
  • Statistical analyses included reliability testing (Cronbach's alpha) and construct validity assessment through intercorrelations.

Main Results:

  • The PedsQL™ SCD Module demonstrated excellent feasibility and reliability for total scale scores (patient self-report α = 0.95; parent proxy-report α = 0.97).
  • Individual scales showed good reliability (α = 0.69-0.97).
  • Results supported construct validity and indicated worse scores for patients with severe SCD, aligning with clinical expectations.

Conclusions:

  • The PedsQL™ SCD Module exhibits acceptable measurement properties for assessing SCD-specific HRQoL.
  • It is a valuable tool for clinical research and practice in evaluating the health and well-being of children with SCD.
  • Combined with other PedsQL™ scales, it enhances the comprehensive understanding of pediatric SCD patients' health status.