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Quality of Life: The Need for a National Database

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Pediatric and Congenital Cardiac Care

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Abstract

Due to recent advances in pediatric cardiovascular therapy, mortality rates for children with heart disease (HD) have decreased dramatically. Despite these advances, however, survivors suffer from morbidity resulting from their circulatory abnormalities and the medical and surgical therapies they have received. These morbidities significantly impact the child’s neurodevelopmental, psychosocial, and physical functioning and diminish their quality of life (QOL). As a result, outcome assessment focusing on QOL has become increasingly important in this high-risk population. QOL may be described as a child’s ability to function in situational contexts and derive personal satisfaction from doing so. This paper will delineate health measurement definitions including QOL and health-related QOL (HRQOL), identify inherent difficulties in HRQOL measurement in the pediatric HD population, and discuss salient aspects of HRQOL instrument evaluation. In addition, this manuscript will describe existing generic and disease-specific HRQOL measures that may be used to assess HRQOL in the pediatric HD population, what research on HRQOL in the pediatric HD population has shown, and the extent to which HRQOL evaluations are being fully utilized in clinical practice. A research and clinical agenda is proposed to harness the potential applications of HRQOL assessment. Finally, the relationship of quality of life, safety, and value will be discussed as well as the formation of a quality of life national database.

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Authors and Affiliations

  1. Department of Pediatrics, Department of Medical Social Sciences, Divisions of Cardiology and Critical Care Medicine, Ann and Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, 225 East Chicago Avenue, Chicago, IL, 60611, USA

    Bradley S. Marino MD, MPP, MSCE

  2. Department of Pediatrics, University of Cincinnati College of Medicine Heart Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, ML 2003, Cincinnati, OH, 45229, USA

    Jeffrey B. Anderson MD, MPH, MBA

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  1. Bradley S. Marino MD, MPP, MSCE
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  2. Jeffrey B. Anderson MD, MPH, MBA
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Correspondence to Bradley S. Marino MD, MPP, MSCE .

Editor information

Editors and Affiliations

  1. School of Medicine,, University of Oslo, Oslo, Norway

    Paul R. Barach

  2. Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Division of Cardiac Surgery, Department of Surgery, Johns Hopkins All Children’s Heart Institute, All Children’s Hospital and Florida Hospital for Children, Johns Hopkins University, St. Petersburg, Tampa, Orlando, FL, USA,, Baltimore, Maryland, USA

    Jeffery P. Jacobs

  3. Wayne State University, Detroit, Michigan, USA

    Steven E. Lipshultz

  4. The Hospital for Sick Children, Toronto, Ontario, Canada

    Peter C. Laussen

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Marino, B.S., Anderson, J.B. (2015). Quality of Life: The Need for a National Database. In: Barach, P., Jacobs, J., Lipshultz, S., Laussen, P. (eds) Pediatric and Congenital Cardiac Care. Springer, London. https://doi.org/10.1007/978-1-4471-6587-3_32

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