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PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients: feasibility, reliability, and validity

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Abstract

Objective

The PedsQL™ (Pediatric Quality of Life Inventory™) is a modular instrument designed to measure health-related quality of life and disease-specific symptoms. The PedsQL™ Cognitive Functioning Scale was developed as a brief generic symptom-specific instrument to measure cognitive functioning. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients.

Methods

The 6-item PedsQL™ Cognitive Functioning Scale and the PedsQL™ 4.0 Generic Core Scales were completed by pediatric liver transplant recipients ages 8–18 years (n = 215) and parents of pediatric liver transplant recipients ages 2–18 years (n = 502). Both patient self-report and parent proxy-report were available for 212 cases. The 72-item Behavior Rating Inventory of Executive Function (BRIEF), a widely validated measure of executive functioning, was completed by 100 parents and 56 teachers on a subset of patients.

Results

The PedsQL™ Cognitive Functioning Scale demonstrated minimal missing responses (0.0%, child report, 0.67%, parent report), achieved excellent reliability (α = 0.88 child report, 0.94 parent report), distinguished between pediatric patients with liver transplants and healthy children supporting discriminant validity, and was significantly correlated with the PedsQL™ 4.0 Generic Core Scales and the BRIEF supporting construct and concurrent validity, respectively. Pediatric liver transplants recipients experienced cognitive functioning comparable to long-term pediatric cancer survivors.

Conclusions

The results demonstrate the feasibility, reliability, discriminant, construct, and concurrent validity of the PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients.

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Acknowledgments

Studies of Pediatric Liver Transplantation Functional Outcomes Group: University of California, Los Angeles (Sue McDiarmid, MD), Cincinnati Children’s Hospital Medical Center (John Bucuvalas, MD), The Children’s Hospital, Denver (Ronald Sokol, MD), Children’s Medical Center, Dallas (Jami Gross, MD), Hospital for Sick Children, Toronto (Vicky Ng, MD), University of Nebraska (Alan Langnas, DO), Mount Sinai Medical Center (Nanda Kerkar, MD), University of Alberta, Edmonton (Susan Gilmour, MD), Children’s Memorial Hospital (Estella Alonso, MD), Children’s Hospital of Philadelphia (Barbara Haber, MD), University of Miami/Jackson Memorial (Andreas Tzakis, MD), University of California, San Francisco (Philip Rosenthal, MD), Johns Hopkins University (Wikrom Karnsakul, MD), Children’s Mercy Hospital, Kansas City (James F. Daniel, MD), St. Louis Children’s Hospital (Yumirle Turmelle, MD), Texas Children’s Hospital (Saul Karpen, MD, PhD), University of Minnesota (Abhi Humar, MD), Children’s Hospital of Pittsburgh (George Mazariegos, MD), University of North Carolina, Chapel Hill (Jeffrey Fair, MD), University of California, San Diego (Joel E. Lavine, MD), Alfred I. DuPont Hospital for Children (Stephen Dunn, MD), Boston Children’s Hospital (Maureen Jonas, MD), University of Michigan (Emily Fredericks, PhD).

Funding

This project was supported by grant number R01 HD045694 of the National Institute of Child Health and Human Development and grant number U01 DK061693 of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health. The sponsoring agency was not involved in the collection, analysis, or interpretation of data or the generation of the report.

Competing Interests

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™.

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Authors and Affiliations

  1. Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, 3137 TAMU, College Station, TX, 77843-3137, USA

    James W. Varni

  2. Department of Psychology and Neuroscience, Baylor University, Waco, TX, USA

    Christine A. Limbers

  3. Department of Child and Adolescent Psychiatry, Children’s Memorial Hospital, Northwestern University, Chicago, IL, USA

    Lisa G. Sorensen

  4. Department of Pediatrics, Children’s Memorial Hospital, Northwestern University, Chicago, IL, USA

    Katie Neighbors & Estella M. Alonso

  5. EMMES Corporation, Rockville, MD, USA

    Karen Martz

  6. Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    John C. Bucuvalas

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  1. James W. Varni
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  2. Christine A. Limbers
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  3. Lisa G. Sorensen
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  4. Katie Neighbors
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  5. Karen Martz
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  6. John C. Bucuvalas
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  7. Estella M. Alonso
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Corresponding author

Correspondence to James W. Varni.

Additional information

On behalf of the Studies of Pediatric Liver Transplantation (SPLIT) Functional Outcomes Group (FOG).

The PedsQL™ is available at http://www.pedsql.org.

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Varni, J.W., Limbers, C.A., Sorensen, L.G. et al. PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients: feasibility, reliability, and validity. Qual Life Res 20, 913–921 (2011). https://doi.org/10.1007/s11136-010-9823-1

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