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Health-Related Quality of Life in Pediatric and Adult Patients with Congenital Heart Disease

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Pediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care

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Abstract

This chapter provides an overview of what health-related quality of life (HRQoL) is and why it is important to measure it, the challenges of measuring HRQoL in children, and available measures for use with children with congenital heart disease (CHD). Evidence about HRQoL outcomes in both children and adults with CHD is presented, together with data about potential correlates of HRQoL. A model of how knowledge about patients’ HRQoL and the influencing factors can potentially guide the development of targeted interventions at key time points is suggested, and some recommendations to optimize HRQoL in patients with CHD are offered.

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Authors and Affiliations

  1. Heart and Lung Directorate and NIHR GOSH BRC, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

    Jo Wray

  2. Department of Pediatrics, Divisions of Pediatric Cardiology and Critical Care Medicine, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Bradley S. Marino

  3. Department of Pediatrics and Cardiac Surgery, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA

    Karen Uzark

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  1. Jo Wray
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  2. Bradley S. Marino
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  3. Karen Uzark
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Correspondence to Jo Wray .

Editor information

Editors and Affiliations

  1. Children’s Hospital Colorado University of Colorado Denver, School of, Aurora, CO, USA

    Eduardo M. da Cruz

  2. Children's Hospital Colorado University of Colorado School of Medicin, Aurora, CO, USA

    Dunbar Ivy

  3. Department of Cardiac Surgery, German Pediatric Heart Center, Sankt Augustin, Germany

    Viktor Hraska

  4. Pediatric Cardiac Surgery, Children's Hospital Colorado University of Colorado, Aurora, CO, USA

    James Jaggers

Section Editor information

  1. Department of Pediatrics, Division of Cardiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA

    Bradley Marino

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Wray, J., Marino, B.S., Uzark, K. (2020). Health-Related Quality of Life in Pediatric and Adult Patients with Congenital Heart Disease. In: da Cruz, E., Ivy, D., Hraska, V., Jaggers, J. (eds) Pediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care. Springer, London. https://doi.org/10.1007/978-1-4471-4999-6_288-1

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