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Health-Related Quality of Life Compared With Cardiopulmonary Exercise Testing at the Midterm Follow-up Visit After Tetralogy of Fallot Repair: A Study of the German Competence Network for Congenital Heart Defects

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Abstract

This nationwide study aimed to evaluate health-related quality of life (QoL) experienced by children after tetralogy of Fallot repair and to compare self-reported physical ability with objective exercise performance. This prospective nonrandomized, government-funded multicenter study enrolled 168 patients (70 girls; ages 8–16 years) after tetralogy of Fallot repair at eight German heart centers. Health-related QoL was analyzed by the self-reported KINDL-R quality-of-life questionnaire. The patients’ actual exercise capacity was evaluated by a cardiopulmonary exercise test. Health-related QoL and cardiopulmonary exercise capacity were compared with those of an age-matched German standard population. Correlation of health-related QoL with self-estimated physical rating and cardiopulmonary exercise capacity were analyzed. Health-related QoL in children and adolescents after tetralogy of Fallot repair is without limitation. Compared with the standard population, all the items evaluated by the KINDL-R questionnaire showed better or similar values, whereas objective exercise capacity compared with that of the standard population was impaired. Peak oxygen uptake correlated significantly with the physical well-being (p = 0.002) and the total score (p = 0.01) of the KINDL-R questionnaire. Health-related QoL experienced by children and adolescents after tetralogy of Fallot repair is comparable with that of the healthy standard population. However, closer inspection shows that self-estimated physical functioning is significantly overestimated compared with actual exercise capacity. Quality-of-life instruments and exercise tests, therefore, should be used in a complementary manner with children to avoid eventually fatal misinterpretation of patient-estimated physical ability.

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Acknowledgments

The authors strongly acknowledge all the participating centers for their efforts during the trial. This study was part of the Competence Network for Congenital Heart Defects funded by the German Federal Ministry of Education and Research (BMBF), FKZ 01G10210.

Conflict of interest

None declared.

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Authors and Affiliations

  1. Clinic for Pediatric Cardiology, University Heart Centre Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany

    Goetz C. Mueller

  2. Department of Heart Thoracic, Transplantation, and Vascular Surgery, Hannover Medical School, Hannover, Germany

    Samir Sarikouch

  3. Division of Imaging Sciences, King’s College London, Guy’s & St Thomas’ Hospital, London, UK

    Philipp Beerbaum

  4. Department of Pediatric Cardiology and Congenital Heart Disease, Deutsches Herzzentrum München, Technische Universität, Munich, Germany

    Alfred Hager

  5. Clinic for Congenital Heart Defects, Heart and Diabetes Centre NRW, Bad Oeynhausen, Ruhr University of Bochum, Bochum, Germany

    Karl-Otto Dubowy

  6. Institute for Biometry and Medical Informatics, University of Magdeburg, Magdeburg, Germany

    Brigitte Peters

  7. Clinic for Pediatric Cardiology, University Heart Centre Hamburg, Hamburg, Germany

    Thomas S. Mir

Authors
  1. Goetz C. Mueller
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  2. Samir Sarikouch
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  3. Philipp Beerbaum
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  4. Alfred Hager
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  5. Karl-Otto Dubowy
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  6. Brigitte Peters
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  7. Thomas S. Mir
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Correspondence to Goetz C. Mueller.

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Mueller, G.C., Sarikouch, S., Beerbaum, P. et al. Health-Related Quality of Life Compared With Cardiopulmonary Exercise Testing at the Midterm Follow-up Visit After Tetralogy of Fallot Repair: A Study of the German Competence Network for Congenital Heart Defects. Pediatr Cardiol 34, 1081–1087 (2013). https://doi.org/10.1007/s00246-012-0603-2

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  • DOI: https://doi.org/10.1007/s00246-012-0603-2

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