Hostname: page-component-586b7cd67f-g8jcs Total loading time: 0 Render date: 2024-11-26T05:24:45.109Z Has data issue: false hasContentIssue false
  • English
  • Français

Exercise capacity, quality of life, and resilience after repair of tetralogy of Fallot: a cross-sectional study of patients operated between 1964 and 2009

Published online by Cambridge University Press:  18 February 2013

Alessandra Frigiola ,
Catherine Bull  and
Jo Wray
Alessandra Frigiola*
Affiliation:
Great Ormond Street Hospital for Children, NHS Trust, London, United Kingdom Institute of Child Health, University College of London, London, United Kingdom
Catherine Bull
Affiliation:
Great Ormond Street Hospital for Children, NHS Trust, London, United Kingdom
Jo Wray
Affiliation:
Great Ormond Street Hospital for Children, NHS Trust, London, United Kingdom
*
Correspondence to: Dr A. Frigiola, MD, Great Ormond Street Hospital for Children, NHS Trust, Great Ormond Street, London WC1N 3JH, United Kingdom. Tel: +44 20 7450 9200 ext. 6712; Fax: +44 20 78138262; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Introduction

Patients with repaired tetralogy of Fallot have good long-term survival but less is known about the subjectively assessed quality of life or objectively measured functional status of those who have not required subsequent pulmonary valve replacement. We assessed these parameters in a group of children and adults free from pulmonary valve replacement after tetralogy of Fallot repair.

Methods and results

A random sample of 50 subjects – 16 children and 34 adults, aged 4.1–56.7 years – who had undergone tetralogy of Fallot repair and were free from subsequent pulmonary valve replacement underwent cardiopulmonary exercise testing and completed standardised questionnaires assessing health-related quality of life and resilience. Patients were generally asymptomatic (median New York Heart Association class = I). Exercise capacity was within two standard deviations of normal for most children and adults (mean z VO2max: 0.20 ± 1.5; mean z VE/VCO2: −0.9 ± 1.3). Children reported a total health-related quality of life score similar to healthy norms (78 ± 10 versus 84 ± 1, p = 0.73). Adult survivors also reported quality of life scores comparable to healthy norms. Resilience was highly correlated with all domains of health-related quality of life (r = 0.713, p < 0.0001).

Conclusions

Patients who have undergone tetralogy of Fallot repair in childhood and have not required pulmonary valve replacement have a good long-term health-related quality of life. The finding that patients with greater resilience had better health-related quality of life suggests that it may be beneficial to implement interventions to foster resilience.

Keywords

Tetralogy of Fallothealth-related quality of liferesilience
Type
Original Articles
Information
Cardiology in the Young , Volume 24 , Issue 1 , February 2014 , pp. 79 - 86
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Uzark, K, Jones, K, Burwinkle, T, Varni, J. The Pediatric Quality of Life Inventory (TM) in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–149.Google Scholar
2. Mattera, JA, De Leon, CM, Wackers, FJ, Williams, CS, Wang, Y, Krumholz, HM. Association of patients’ perception of health status and exercise electrocardiogram, myocardial perfusion imaging, and ventricular function measures. Am Heart J 2000; 140: 409–418.Google Scholar
3. Gratz, A, Hess, J, Hager, A. Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease. Eur Heart J 2009; 30: 497–504.Google Scholar
4. Moons, P, Van Deyk, K, De Geest, S, et al. Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 2005; 91: 1193–1198.Google Scholar
5. Kwon, EN, Mussatto, K, Simpson, PM, Brosig, C, Nugent, M, Samyn, MM. Children and adolescents with repaired tetralogy of Fallot report quality of life similar to healthy peers. Congenit Heart Dis 2011; 6: 18–27.Google Scholar
6. Cohen, M, Mansoor, D, Langut, H, Lorber, A. Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med 2007; 69: 313–318.Google Scholar
7. Rose, M, Köhler, K, Köhler, F, Sawitzky, B, Fliege, H, Klapp, BF. Determinants of the quality of life of patients with congenital heart disease. Qual Life Res 2005; 14: 35–43.Google Scholar
8. Chen, CA, Liao, SC, Wang, JK, et al. Quality of life in adults with congenital heart disease: biopsychosocial determinants and sex-related differences. Heart 2011; 97: 38–43.Google Scholar
9. Strauss, B, Brix, C, Fischer, S, et al. The influence of resilience on fatigue in cancer patients undergoing radiation therapy (RT). J Cancer Res Clin Oncol 2007; 133: 511–518.Google Scholar
10. Perloff, JK. Congenital heart disease after childhood: an expanding patient population. 22nd Bethesda Conference, Maryland, October 18–19, 1990. J Am Coll Cardiol, 1991; 18: pp. 315–318.Google Scholar
11. Webb, GD, Williams, RG. Care of the adult with congenital heart disease: introduction. J Am Coll Cardiol 2001; 37: 1166.Google Scholar
12. Discigil, B, Dearani, JA, Puga, FJ, et al. Late pulmonary valve replacement after repair of tetralogy of Fallot. J Thorac Cardiovasc Surg 2001; 121: 344–351.Google Scholar
13. Therrien, J, Marx, GR, Gatzoulis, MA. Late problems in tetralogy of Fallot – recognition, management and prevention. Cardiol Clin 2002; 3: 395–404.Google Scholar
14. Gatzoulis, MA, Balaji, S, Webber, SA, et al. Risk factors for arrhythmia and sudden death late after repair of tetralogy of Fallot: a multicentre study. Lancet 2000; 356: 975–981.Google Scholar
15. Frigiola, A, Tsang, V, Bull, C, et al. Biventricular response after pulmonary valve replacement for right ventricular outflow tract dysfunction: is age a predictor of outcome? Circulation 2008; 118 (14 Suppl): S182–S190.Google Scholar
16. Giardini, A, Odendaal, D, Khambadkone, S, Derrick, G. Physiologic decrease of ventilatory response to exercise in the second decade of life in healthy children. Am Heart J 2011; 161: 1214–1219.Google Scholar
17. Neder, JA, Nery, LE, Peres, C, Whipp, BJ. Reference values for dynamic responses to incremental cycle ergometry in males and females aged 20 to 80. Am J Respir Crit Care Med 2001; 164 (Pt 1): 1481–1486.Google Scholar
18. Cooper, DM, Weiler-Ravell, D. Gas exchange response to exercise in children. Am Rev Respir Dis 1984; 129 (Pt 2): S47–S48.Google Scholar
19. Upton, P, Eiser, C, Cheung, I, et al. Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2005; 3: 22.CrossRefGoogle ScholarPubMed
20. Varni, JW, Seid, M, Kurtin, PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39: 800–812.Google Scholar
21. Hawthorne, G, Herrman, H, Murphy, B. Interpreting the WHOQOL-BREF: preliminary population normal and effect sizes. Social Indicators Research 2006; 77: 37–59.Google Scholar
22. Silva, AM, Vaz, C, Areias, ME, et al. Quality of life of patients with congenital heart diseases. Cardiol Young 2011; 21: 670–676.Google Scholar
23. Teixeira, FM, Coelho, RM, Proença, C, et al. Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 2011; 32: 1132–1138.Google Scholar
24. Thakar, S, Christopher, S, Rajshekhar, V. Quality of life assessment after central corpectomy for cervical spondylotic myelopathy: comparative evaluation of the 36-Item Short Form Health Survey and the World Health Organization Quality of Life-Bref. J Neurosurg Spine 2009; 11: 402–412.Google Scholar
25. Wagnild, GM. The Resilience Scale User's Guide for the US English Version of the Resilience Scale and the 14-Item Reselience Scale (RS-14). The Resilience Centre, Montana, 2009.Google Scholar
26. Damásio, B, Borsa, JC, da Silva, JP. 14-Item Resilience Scale (RS-14): psychometric properties of the Brazilian version. J Nurs Meas 2011; 19: 131–145.Google Scholar
27. Walker, WT, Temple, IK, Gnanapragasam, JP, Goddard, JR, Brown, EM. Quality of life after repair of tetralogy of Fallot. Cardiol Young 2002; 12: 549–553.Google Scholar
28. Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.Google Scholar
29. Varni, JW, Limbers, CA, Burwinkle, TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 43.Google Scholar
30. Hövels-Gürich, HH, Konrad, K, Skorzenski, D, et al. Long-term neurodevelopmental outcome and exercise capacity after corrective surgery for tetralogy of Fallot or ventricular septal defect in infancy. Ann Thorac Surg 2006; 81: 958–966.Google Scholar
31. Wright, M, Nolan, T. Impact of cyanotic heart disease on school performance. Arch Dis Child 1994; 71: 64–70.Google Scholar
32. Lane, DA, Lip, GY, Millane, TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71–75.Google Scholar
33. Loup, O, von Weissenfluh, C, Gahl, B, Schwerzmann, M, Carrel, T, Kadner, A. Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 2009; 36: 105–111.Google Scholar
34. Kim, DH, Yoo, IY. Factors associated with resilience of school age children with cancer. J Paediatr Child Health 2010; 46: 431–436.Google Scholar
35. Burton, NW, Pakenham, KI, Brown, WJ. Feasibility and effectiveness of psychosocial resilience training: a pilot study of the READY program. Psychol Health Med 2010; 15: 266–277.Google Scholar
36. Hinds, PS, Quargnenti, A, Bush, AJ, et al. An evaluation of the impact of a self-care coping intervention on psychological and clinical outcomes in adolescents with newly diagnosed cancer. Eur J Oncol Nurs 2000; 4: 6–17; discussion 18–9.Google Scholar
37. Hunter, HL, Rosnov, DL, Koontz, D, Roberts, MC. Camping programs for children with chronic illness as a modality for recreation, treatment, and evaluation: an example of a mission-based program evaluation of a diabetes camp. J Clin Psychol Med Setting 2006; 13: 64–77.Google Scholar
38. McCormick, MC, Brooks-Gunn, J, Buka, SL, et al. Early intervention in low birth weight premature infants: results at 18 years of age for the Infant Health and Development Program. Pediatrics 2006; 117: 771–780.Google Scholar
39. Wyrwich, KW, Bullinger, M, Aaronson, N, et al. Estimating clinically significant differences in quality of life outcomes. Qual Life Res 2005; 14: 285–295.Google Scholar