Hostname: page-component-78c5997874-mlc7c Total loading time: 0 Render date: 2024-11-05T11:50:26.309Z Has data issue: false hasContentIssue false
  • English
  • Français

Long-term psychosocial outcome of adults with tetralogy of Fallot and transposition of the great arteries: a historical comparison

Published online by Cambridge University Press:  08 July 2013

Petra Opić ,
Elisabeth M.W.J. Utens ,
Titia P.E. Ruys ,
Ron T. van Domburg ,
Maarten Witsenburg ,
Ad J.J.C. Bogers  and
Jolien W. Roos-Hesselink
Petra Opić
Affiliation:
Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands
Elisabeth M.W.J. Utens*
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands
Titia P.E. Ruys
Affiliation:
Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands
Ron T. van Domburg
Affiliation:
Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands
Maarten Witsenburg
Affiliation:
Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands
Ad J.J.C. Bogers
Affiliation:
Department of Cardiothoracic Surgery, Erasmus Medical Center, Rotterdam, The Netherlands
Jolien W. Roos-Hesselink
Affiliation:
Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands
*
Corresponding to: Dr E. M. W. J. Utens, Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center – Sophia Children's Hospital, PO Box 2060, 3000 CB Rotterdam, The Netherlands. Tel: +31 10 7040209; Fax: +31 10 7036803; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective: To make a historical comparison on the long-term psychosocial outcome of cardiothoracic surgery during childhood. Methods: Adult patients operated for tetralogy of Fallot or transposition of the great arteries between 1980 and 1990 (recent sample) were compared with patients who underwent surgery and were investigated 10 years earlier (historical sample). In addition, atrial switch and arterial switch patients within the recent sample were compared. Psychosocial functioning was measured using standardised, validated psychological questionnaires. Results: Although the recent sample of patients overall shows a favourable quality of life, impairments were found in income, living conditions, relationships, offspring, and occupational level. Compared with the historical sample, the recent sample showed no significant improvements on psychosocial functioning, except for a better educational level. The amount of educational problems, such as learning difficulties, was still high compared with normative data. Recently operated patients with transposition of the great arteries (arterial switch) scored significantly better on the Short Form-36 vitality scale (p = 0.02) compared with historical patients with transposition of the great arteries (atrial switch). Conclusions: Despite improvements in medical treatment over the past few decades, hardly any change was found in the psychosocial outcome of the recent patient sample compared with the historical patient sample. In particular, the percentage of patients needing special education and showing learning problems remained high, whereas income was low compared with normative data.

Keywords

Transposition of the great arteriestetralogy of Fallotquality of lifehistorical comparisoncomplex congenital heart disease
Type
Original Articles
Information
Cardiology in the Young , Volume 24 , Issue 4 , August 2014 , pp. 593 - 604
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. Warnes, CA. The adult with congenital heart disease: born to be bad? J Am Coll Cardiol 2005; 46: 1–8.CrossRefGoogle ScholarPubMed
2. Brickner, ME, Hillis, LD, Lange, RA. Congenital heart disease in adults. First of two parts. N Engl J Med 2000; 342: 256–263.CrossRefGoogle ScholarPubMed
3. Kovacs, AH, Sears, SF, Saidi, AS. Biopsychosocial experiences of adults with congenital heart disease: review of the literature. Am Heart J 2005; 150: 193–201.CrossRefGoogle ScholarPubMed
4. van Rijen, EH, Utens, EM, Roos-Hesselink, JW, et al. Psychosocial functioning of the adult with congenital heart disease: a 20-33 years follow-up. Eur Heart J 2003; 24: 673–683.CrossRefGoogle ScholarPubMed
5. van Rijen, EH, Utens, EM, Roos-Hesselink, JW, et al. Current subjective state of health, and longitudinal psychological well-being over a period of 10 years, in a cohort of adults with congenital cardiac disease. Cardiol Young 2005; 15: 168–175.CrossRefGoogle Scholar
6. Utens, EMWJ, van Rijen, EH, Erdman, RAM, et al. Rotterdams Kwaliteit van Leven – Interview. 2000.Google Scholar
7. Netherlands Central Bureau of Statistics 2010.CrossRefGoogle Scholar
8. Ware, JE Jr, Sherbourne, CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473–483.CrossRefGoogle ScholarPubMed
9. Aaronson, NK, Muller, M, Cohen, PD, et al. Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol 1998; 51: 1055–1068.CrossRefGoogle ScholarPubMed
10. Moons, P, Van Deyk, K, De Bleser, L, et al. Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13: 407–413.CrossRefGoogle ScholarPubMed
11. Kokkonen, J, Paavilainen, T. Social adaptation of young adults with congenital heart disease. Int J Cardiol 1992; 36: 23–29.CrossRefGoogle ScholarPubMed
12. Sairanen, HI, Nieminen, HP, Jokinen, EV. Late results and quality of life after pediatric cardiac surgery in Finland: a population-based study of 6,461 patients with follow-up extending up to 45 years. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005: 168–172.CrossRefGoogle Scholar
13. Nieminen, H, Sairanen, H, Tikanoja, T, et al. Long-term results of pediatric cardiac surgery in Finland: education, employment, marital status, and parenthood. Pediatrics 2003; 112: 1345–1350.CrossRefGoogle ScholarPubMed
14. Moons, P, De Bleser, L, Budts, W, et al. Health status, functional abilities, and quality of life after the Mustard or Senning operation. Ann Thorac Surg 2004; 77: 1359–1365; discussion 65.CrossRefGoogle ScholarPubMed
15. Kamphuis, M, Ottenkamp, J, Vliegen, HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356–362.CrossRefGoogle ScholarPubMed
16. Moons, P, Van Deyk, K, Marquet, K, De Bleser, L, De Geest, S, Budts, W. Profile of adults with congenital heart disease having a good, moderate, or poor quality of life: a cluster analytic study. Eur J Cardiovasc Nurs 2009; 8: 151–157.CrossRefGoogle ScholarPubMed
17. Utens, EM, Verhulst, FC, Erdman, RA, et al. Psychosocial functioning of young adults after surgical correction for congenital heart disease in childhood: a follow-up study. J Psychosom Res 1994; 38: 745–758.CrossRefGoogle ScholarPubMed
18. Simko, LC, McGinnis, KA, Schembri, J. Educational needs of adults with congenital heart disease. J Cardiovasc Nurs 2006; 21: 85–94.CrossRefGoogle ScholarPubMed
19. Ong, L, Nolan, RP, Irvine, J, Kovacs, AH. Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int J Behav Med 2011; 18: 260–267.CrossRefGoogle ScholarPubMed
20. Zomer, AC, Vaartjes, I, Uiterwaal, CS, et al. Social burden and lifestyle in adults with congenital heart disease. Am J Cardiol 2012; 109: 1657–1663.CrossRefGoogle ScholarPubMed
21. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl 1): 92–104.CrossRefGoogle Scholar
22. Miatton, M, De Wolf, D, François, K, Thiery, E, Vingerhoets, G. Neuroco gnitive consequences of surgically corrected congenital heart defects: a review. Neuropsychol Rev 2006; 16: 65–85.CrossRefGoogle Scholar
23. Daliento, L, Mapelli, D, Russo, G, et al. Health related quality of life in adults with repaired tetralogy of Fallot: psychosocial and cognitive outcomes. Heart 2005; 91: 213–218.CrossRefGoogle ScholarPubMed
24. Ebenroth, ES, Hurwitz, RA. Long-term functional outcome of patients following the mustard procedure: the next decade of follow-up. Congenit Heart Dis 2007; 2: 235–241.CrossRefGoogle ScholarPubMed
25. Bygstad, E, Pedersen, LC, Pedersen, TA, Hjortdal, VE. Tetralogy of Fallot in men: quality of life, family, education, and employment. Cardiol Young 2012; 22: 417–423.CrossRefGoogle ScholarPubMed
26. Moons, P, Gewillig, M, Sluysmans, T, et al. Long term outcome up to 30 years after the Mustard or Senning operation: a nationwide multicentre study in Belgium. Heart 2004; 90: 307–313.CrossRefGoogle ScholarPubMed
27. Kovacs, AH, Saidi, AS, Kuhl, EA, et al. Depression and anxiety in adult congenital heart disease: predictors and prevalence. Int J Cardiol 2009; 137: 158–164.CrossRefGoogle ScholarPubMed
28. Görler, H, Ono, M, Thies, A, et al. Long-term morbidity and quality of life after surgical repair of transposition of the great arteries: atrial versus arterial switch operation. Interact Cardiovasc Thorac Surg 2011; 12: 569–574.CrossRefGoogle ScholarPubMed
29. 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; discussion 11.CrossRefGoogle ScholarPubMed
30. Warnes, CA, Williams, RG, Bashore, TM , et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in collaboration with the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J Am Coll Cardiol 2008; 52: e143–e263.CrossRefGoogle Scholar
31. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143–1172.CrossRefGoogle ScholarPubMed