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Quality of life of adult congenital heart disease patients: a systematic review of the literature

Published online by Cambridge University Press:  07 February 2013

Theodora Fteropoulli ,
Jan Stygall ,
Shay Cullen ,
John Deanfield  and
Stanton P. Newman
Theodora Fteropoulli
Affiliation:
Centre for Health Services Research, School of Health Sciences, City University London, London, United Kingdom
Jan Stygall
Affiliation:
Centre for Health Services Research, School of Health Sciences, City University London, London, United Kingdom
Shay Cullen
Affiliation:
GUCH Unit, The Heart Hospital, University College of London Hospitals NHS Foundation Trust, London, United Kingdom
John Deanfield
Affiliation:
GUCH Unit, The Heart Hospital, University College of London Hospitals NHS Foundation Trust, London, United Kingdom
Stanton P. Newman*
Affiliation:
Centre for Health Services Research, School of Health Sciences, City University London, London, United Kingdom
*
Correspondence to: Professor S. P. Newman, D.Phil., MRCP(Hon), FBPS, Centre for Health Services Research, School of Health Sciences, City University, Northampton Square, London EC1 V 0HB, United Kingdom. Tel: +44 207 040 5767; Fax: +44 207 040 0875; E-mail: [email protected]
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Abstract

Aims

This review explores the quality of life of adult congenital heart disease patients and the relationship between disease severity and quality of life.

Methods

We searched seven electronic databases and the bibliography of articles. The 31 selected studies fulfilled the following criteria: adult population; quantitative; assessment of quality of life and/or impact of disease severity on quality of life using validated measures; English language. Data extraction forms were used to summarise the results.

Results

There are evident methodological limitations within the reviewed studies such as heterogeneous populations, designs, and quality of life conceptualisations and measurements. Despite these problems, findings suggest that the quality of life of adult congenital heart disease patients is compromised in the physical domain compared with their healthy counterparts, whereas no differences were found in relation to the psychosocial and environmental/occupational domain. Some severity variables appear to be significant correlates of quality of life and could be considered in a future standardised classification of disease severity.

Conclusion

The methodological limitations of past research in relation to the definition and measurement of quality of life, the study designs, and disease severity classifications need to be addressed in future studies in order to provide robust evidence and valid conclusions in this area of study. This will enable the development of targeted interventions for the improvement of quality of life in the adult population of congenital heart disease patients.

Keywords

Quality of lifecongenital heart diseaseadultadults with congenital heart diseaseGUCHseverity
Type
Review Article
Information
Cardiology in the Young , Volume 23 , Issue 4 , August 2013 , pp. 473 - 485
Copyright
Copyright © Cambridge University Press 2013 

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References

1. British Heart Foundation. Adults with congenital heart disease (ACHD). Factfile 09/2004.Google Scholar
2. Department of Health Vascular Programme Team. A commissioning guide for services for young people and adults with congenital heart disease (also known as Grown Ups with Congenital Heart Disease or GUCH). 2006.Google Scholar
3. Skevington, SM, Lotfy, M, O'Connell, KA. The World Health Organization's WHOQOLBREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res 2004; 13: 299–310.Google Scholar
4. 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.Google Scholar
5. Bol Raap, G, Meijboom, FJ, Kappetein, AP, Galema, TW, Yap, S-C, Bogers, AJJC. Long-term follow-up and quality of life after closure of ventricular septal defect in adults. Eur J Cardiothorac Surg 2007; 32: 215–219.Google Scholar
6. van den Bosch, AE, Roos-Hesselink, JW, van Domburg, R, Bogers, AJJC, Simoons, ML, Meijboom, FJ. Long-term outcome and quality of life in adult patients after the Fontan operation. Am J Cardiol 2004; 93: 1141–1145.Google Scholar
7. Bruto, VC, Harrison, DA, Fedak, PWM. Determinants of health-related quality of life in adults with congenital heart disease. Congenit Heart Dis 2007; 2: 301–313.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. Cohen, M, Daniela, M, Yalonetsky, S, Gagin, R, Lorber, A. Psychological functioning and health-related quality of life (HRQoL) in older patients following percutaneous closure of the secundum atrial septal defect (ASD). Arch Gerontol Geriatr 2010; 50: e5–e8.Google Scholar
10. 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.Google Scholar
11. 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.Google Scholar
12. 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
13. Hager, A, Hess, J. Comparison of health related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease. Heart 2005; 91: 517–520.Google Scholar
14. Immer, FF, Althaus, SM, Berdat, PA, Saner, H, Carrel, TP. Quality of life and specific problems after cardiac surgery in adolescents and adults with congenital heart diseases. Eur J Cardiovasc Prev Rehabil 2005; 12: 138–143.Google Scholar
15. Irtel, TA, Vetter, C, Stuber, T, et al. Impact of arrhythmias on health-related quality of life in adults with congenital cardiac disease. Cardiol Young 2005; 15: 627–631.Google Scholar
16. Jefferies, JL, Noonan, JA, Keller, BB, Wilson, JF, Griffith, C III. Quality of life and social outcomes in adults with congenital heart disease living in rural areas of Kentucky. Am J Cardiol 2004; 94: 263–266.Google Scholar
17. Kamphuis, M, Vliegen, HW, Vogels, T, et al. The need for cardiac follow-up in adults with mild congenital cardiac disease. Cardiol Young 2002a; 12: 74–478.Google Scholar
18. 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 2002b; 87: 356–362.CrossRefGoogle ScholarPubMed
19. Lane, DA, Lip, GYH, Millane, TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71–75.Google Scholar
20. 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
21. Lu, JC, Cotts, TB, Agarwal, PP, Attili, AK, Dorfman, AL. Relation of right ventricular dilation, age of repair, and restrictive right ventricular physiology with patient-reported quality of life in adolescents and adults with repaired tetralogy of Fallot. Am J Cardiol 2010; 106: 1798–1802.Google Scholar
22. Mokhles, MM, van de Woestijne, PC, de Jong, PL, et al. Clinical outcome and health-related quality of life after right-ventricular-outflow-tract reconstruction with an allograft conduit. Eur J Cardiothorac Surg 2011; 40: 571–578.Google Scholar
23. 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.Google Scholar
24. Moons, P, Van Deyk, K, De Geest, S, Gewillig, M, Budts, W. 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
25. 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.Google Scholar
26. Muller, J, Hess, J, Hager, A. Exercise performance and quality of life is more impaired in Eisenmenger syndrome than in complex cyanotic congenital heart disease with pulmonary stenosis. Int J Cardiol 2010; 150: 177–181.Google Scholar
27. Rietveld, S, Mulder, BJM, van Beest, I, et al. Negative thoughts in adults with congenital heart disease. Int J Cardiol 2002; 86: 19–26.Google Scholar
28. 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
29. Saliba, Z, Butera, G, Bonnet, D, et al. Quality of life and perceived health status in surviving adults with univentricular heart. Heart 2001; 86: 69–73.Google Scholar
30. Simko, LC, McGinnis, KA. Quality of life experienced by adults with congenital heart disease. AACN Adv Crit Care 2003; 14: 42–53.Google ScholarPubMed
31. Simko, LC, McGinnis, KA. What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly? JCN 2005; 20: 206–214.Google ScholarPubMed
32. Ternestedt, B-M, Wall, K, Oddsson, H, Riesenfeld, T, Groth, I, Schollin, J. Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect. Pediatr Cardiol 2001; 22: 128–132.Google Scholar
33. Vandekerckhove, KDHM, Blom, NA, Lalezari, S, Koolbergen, DR, Rijlaarsdam, MEB, Hazekamp, MG. Long-term follow-up of arterial switch operation with emphasis on function and dimensions of left ventricle and aorta. Eur J Cardiothorac Surg 2009; 35: 582–588.Google Scholar
34. Winter, MM, Bouma, BJ, van Dijk, APJ, et al. Relation of physical activity, cardiac function, exercise capacity, and quality of life in patients with systemic right ventricle. Am J Cardiol 2008; 102: 1258–1262.Google Scholar
35. Winter, MM, Reisma, C, Kedde, H, et al. Sexuality in adult patients with congenital heart disease and their partners. Am J Cardiol 2010; 106: 1163–1168.Google Scholar
36. van Rijen, EHM, Utens, EMWJ, Roos-Hesselink, JW, et al. Longitudinal development of psychopathology in an adult congenital heart disease cohort. Int J Cardiol 2005; 99: 315–323.Google Scholar
37. Claessens, P, Moons, P, de Casterlé, BD, Cannaerts, N, Budts, W, Gewillig, M. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. Eur J Cardiovasc Nurs 2005; 4: 3–10.Google Scholar
38. Moons, P, Norekvai, TM. Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2005; 5: 16–20.Google Scholar
39. Schwartz, CE, Sprangers, MAG. Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Soc Sci Med 1999; 48: 1531–1548.Google Scholar
40. 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.Google Scholar
41. Smith, KW, Avis, NE, Assmann, SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999; 8: 447–459.Google Scholar
42. Pike, NA, Evangelista, LS, Doering, LV, Koniak-Griffin, D, Lewis, AB, Child, AS. Health-related quality of life: a closer look at related research in patients who have undergone the Fontan operation over the last decade. Heart Lung 2007; 36 (1): 3–15.Google Scholar
43. Moons, P, van Deyk, K, Budts, W, De Geest, S. Caliber of quality-of-life assessments in congenital heart disease. Arch Pediatr Adolesc Med 2004; 158: 1062–1069.CrossRefGoogle ScholarPubMed
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