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External validity of the pediatric cardiac quality of life inventory

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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.


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.


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.


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

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Heart disease


Health-related quality of life


Pediatric cardiac quality of life inventory


Disease impact


Psychosocial impact


Total score


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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.

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

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Correspondence to Bradley S. Marino.

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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).

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