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External validity of the pediatric cardiac quality of life inventory

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Abstract

Purpose

The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific, health-related quality of life (HRQOL) measure for pediatric heart disease (HD). The purpose of this study was to demonstrate the external validity of PCQLI scores.

Methods

The PCQLI development site (Development sample) and six geographically diverse centers in the United States (Composite sample) recruited pediatric patients with acquired or congenital HD. Item response option variability, scores [Total (TS); Disease Impact (DI) and Psychosocial Impact (PI) subscales], patterns of correlation, and internal consistency were compared between samples.

Results

A total of 3,128 patients and parent participants (1,113 Development; 2,015 Composite) were analyzed. Response option variability patterns of all items in both samples were acceptable. Inter-sample score comparisons revealed no differences. Median item–total (Development, 0.57; Composite, 0.59) and item–subscale (Development, DI 0.58, PI 0.59; Composite, DI 0.58, PI 0.56) correlations were moderate. Subscale–subscale (0.79 for both samples) and subscale—total (Development, DI 0.95, PI 0.95; Composite, DI 0.95, PI 0.94) correlations and internal consistency (Development, TS 0.93, DI 0.90, PI 0.84; Composite, TS 0.93, DI 0.89, PI 0.85) were high in both samples.

Conclusion

PCQLI scores are externally valid across the US pediatric HD population and may be used for multi-center HRQOL studies.

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Abbreviations

HD:

Heart disease

HRQOL:

Health-related quality of life

PCQLI:

Pediatric cardiac quality of life inventory

DI:

Disease impact

PI:

Psychosocial impact

TS:

Total score

S/P:

Status post

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Acknowledgments

The following persons participated in the enrollment of patients, data collection, study coordination or manuscript preparation: Cincinnati Children’s Hospital Medical Center—Charlotte Andersen, RN, MSN, PMP, Shawna Hottinger, MS, Aimee Baker, MA, Emily Claybon, MA, Kaleigh Coughlin, BA, Brett Morgan, BS, Baiyang Wang, MS, Loran Carroll, BS, Melanie Riedel, BS, Michael Whalen; The Children’s Hospital of Philadelphia—Linda Hurd, MSN, CRNP, Janice Prodell, RN, Lynda Ahearn, RN, Lydia Kruge, BA, Anita Pudusseri, BS, Darryl Powell, Andrew Schissler, BSE, Josie Welkom, BA, Stanley O. Dunn, BA; Children’s Hospital Boston—Annette Baker, MSN, CRNP, Jill Cotter, BA, Danielle Martin, BA Erica Denhoff, BA, Ellen McGrath, BSN; University of California San Francisco Children’s Hospital—David Teitel, MD, Laura Robertson, MD; Phoenix Children’s Hospital—Melissa Hill, PA-C; Children’s Hospital of Wisconsin—Stuart Berger, MD, Nancy Ghanayem, MD, Lisa Young-Borkowski, MSN, Mary Krolikowski, MSN, Angie Klemm, Mara Koffarnus; University of Texas Southwestern Medical Center Dallas—Gloria Williams, BA. Funding Sources: National Institute of Child Health and Human Development K23 Grant (5-K23-HD048637), Rockville, MD. American Heart Association – Pennsylvania/Delaware Affiliate (now Great Rivers Affiliate) Beginning Grant-in-Aid (0465467U), Columbus, OH. Cincinnati Children’s Hospital Research Foundation, Cincinnati, OH. The Children’s Hospital of Philadelphia Institutional Development Fund, Philadelphia, PA.

Conflict of interest

There are no financial relationships or conflicts of interest to disclose relevant to this manuscript.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Division of Cardiology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, 3333 Burnet Avenue, MLC 2003, Cincinnati, OH, 45229, USA

    Bradley S. Marino, Richard Davis, Ryan S. Tomlinson & Katelyn Mellion

  2. Department of Pediatrics, Division of Critical Care Medicine, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, 45229, USA

    Bradley S. Marino

  3. Department of Pediatrics, Division of Behavioral and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, 45229, USA

    Dennis Drotar

  4. Department of Pediatrics, Division of Biostatistics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Amy Cassedy & Richard Ittenbach

  5. Department of Pediatrics, Division of Cardiology, The Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Kathleen Mussatto

  6. Department of Pediatrics, Division of Cardiology, The University of Texas Southwestern Medical Center Dallas, Dallas, TX, USA

    Lynn Mahony

  7. Department of Cardiology, Children’s Hospital Boston, and Department of Pediatrics, Harvard Medical School, Boston, MA, USA

    Jane W. Newburger

  8. Department of Pediatrics, Division of Cardiology, The University of California San Francisco Children’s Hospital, University of San Francisco School of Medicine, San Francisco, CA, USA

    Elizabeth Tong

  9. Department of Pediatrics, Division of Cardiology, Phoenix Children’s Hospital, Phoenix, AZ, USA

    Mitchell I. Cohen

  10. Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Mark A. Helfaer

  11. Department of Pediatrics, Division of Psychology, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Anne E. Kazak

  12. Department of Paediatric Cardiology, The Royal Brompton and Harefield NHS Trust, London, UK

    Jo Wray

  13. Department of Pediatrics, Division of Cardiology, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Gil Wernovsky

  14. Department of Medicine, Division of General Internal Medicine, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Judy A. Shea

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  1. Bradley S. Marino
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  2. Dennis Drotar
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  3. Amy Cassedy
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  4. Richard Davis
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  14. Jo Wray
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  15. Gil Wernovsky
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  17. Richard Ittenbach
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Corresponding author

Correspondence to Bradley S. Marino.

Additional information

This study is conducted for the PCQLI Testing Study Consortium Investigators. Other investigators for the PCQLI Testing Study Consortium are listed in the acknowledgments.

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Marino, B.S., Drotar, D., Cassedy, A. et al. External validity of the pediatric cardiac quality of life inventory. Qual Life Res 20, 205–214 (2011). https://doi.org/10.1007/s11136-010-9731-4

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