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Published on: November 5, 2019
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
Insights
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.
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.
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.
