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PedsQL™ multidimensional fatigue scale in sickle cell disease: Feasibility, reliability, and validity

Authors

  • Julie A. Panepinto MD, MSPH,

    Corresponding author
    1. Department of Pediatrics, Division of Hematology/Oncology/Bone Marrow Transplantation, Children's Hospital of Wisconsin of the Children's Research Institute, Medical College of Wisconsin, Milwaukee, Wisconsin
    • Correspondence to: Julie A. Panepinto, Department of Pediatrics, Division of Hematology/Oncology/Bone Marrow Transplantation, MFRC, MSPH, 8701 Watertown Plank Road, Milwaukee, WI 53226.

      E-mail: jpanepin@mcw.edu

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  • Sylvia Torres MPH,

    1. Department of Pediatrics, Division of Hematology/Oncology/Bone Marrow Transplantation, Children's Hospital of Wisconsin of the Children's Research Institute, Medical College of Wisconsin, Milwaukee, Wisconsin
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  • Cristiane B. Bendo PhD, BDS,

    1. Department of Pediatric Dentistry and Orthodontics, Faculty of Dentistry, Federal University of Minas Gerais, Belo Horizonte, MG, Brazil
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  • Timothy L. McCavit MD,

    1. Department of Pediatrics, University of Texas Southwestern Medical Center/Children's Medical Center, Dallas, Texas
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  • Bogdan Dinu MD,

    1. Baylor College of Medicine, Texas Children's Hospital, Houston, Texas
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  • Sandra Sherman-Bien PhD,

    1. Jonathan Jaques Children's Cancer Center, Miller Children's Hospital Long Beach, Long Beach, California
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  • Christy Bemrich-Stolz MD,

    1. Children's Hospital of Alabama, University of Alabama at Birmingham, Birmingham, Alabama
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  • James W. Varni PhD

    1. Department of Pediatrics, College of Medicine, Texas A&M University, College Station, Texas
    2. Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, Texas
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  • Conflict of interest: Dr. Varni holds the copyright and the trademark for the PedsQL™ and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory™.

Abstract

Background

Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self-report ages 5–18 years and parent proxy-report for ages 2–18 years.

Procedure

This was a cross-sectional multi-site study whereby 240 pediatric patients with SCD and 303 parents completed the 18-item PedsQL™ Multidimensional Fatigue Scale. Participants also completed the PedsQL™ 4.0 Generic Core Scales.

Results

The PedsQL™ Multidimensional Fatigue Scale evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.90; parent proxy-report α = 0.95), and acceptable reliability for the three individual scales (patient self-report α = 0.77–0.84; parent proxy-report α = 0.90–0.97). Intercorrelations of the PedsQL™ Multidimensional Fatigue Scale with the PedsQL™ Generic Core Scales were predominantly in the large (≥0.50) range, supporting construct validity. PedsQL™ Multidimensional Fatigue Scale Scores were significantly worse with large effects sizes (≥0.80) for patients with SCD than for a comparison sample of healthy children, supporting known-groups discriminant validity. Confirmatory factor analysis demonstrated an acceptable to excellent model fit in SCD.

Conclusions

The PedsQL™ Multidimensional Fatigue Scale demonstrated acceptable to excellent measurement properties in SCD. The results demonstrate the relative severity of fatigue symptoms in pediatric patients with SCD, indicating the potential clinical utility of multidimensional assessment of fatigue in patients with SCD in clinical research and practice. Pediatr Blood Cancer 2014;61:171–177. © 2013 Wiley Periodicals, Inc.

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