Hostname: page-component-8448b6f56d-qsmjn Total loading time: 0 Render date: 2024-04-23T14:19:20.683Z Has data issue: false hasContentIssue false
  • English
  • Français

Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis

Published online by Cambridge University Press:  12 November 2015

Morten Schrøder ,
Kirsten A. Boisen ,
Jesper Reimers ,
Grete Teilmann  and
Jesper Brok
Morten Schrøder*
Affiliation:
Department of Pediatric and Adolescent Medicine, Center of Adolescent Medicine, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
Kirsten A. Boisen
Affiliation:
Department of Pediatric and Adolescent Medicine, Center of Adolescent Medicine, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
Jesper Reimers
Affiliation:
Department of Pediatric and Adolescent Medicine, Section of Pediatric Cardiology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
Grete Teilmann
Affiliation:
Department of Pediartric and Adolescent Medicine, Nordsjællands Hospital, University of Copenhagen, Hillerød, Denmark
Jesper Brok
Affiliation:
Department of Paediatric and Adolescent Medicine, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
*
Correspondence to: M. Schrøder, MD, Department of Pediatric and Adolescent Medicine, Center of Adolescent Medicine, Rigshospitalet, University of Copenhagen, Blegdamsvej 9, 2100-Denmark. Tel: +452 840 3244; Fax: +45 35454673; E-mail: mortenschroder@gmail.com
Get access Rights & Permissions [Opens in a new window]

Abstract

Purpose

We performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.

Methods

We carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.

Results

We included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.

Conclusion

For the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.

Keywords

CHDquality of lifeadolescentsyoung adultsoutcome
Type
Review Articles
Information
Cardiology in the Young , Volume 26 , Supplement 3 , March 2016 , pp. 415 - 425
Check for updates
Copyright
© Cambridge University Press 2015 

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. Hoffman, JIE, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.CrossRefGoogle ScholarPubMed
2. Greutmann, M, Tobler, D. Changing epidemiology and mortality in adult congenital heart disease: looking into the future. Future Cardiol 2012; 8: 171–177.CrossRefGoogle ScholarPubMed
3. Schranz, D, Michel-Behnke, I. Advances in interventional and hybrid therapy in neonatal congenital heart disease. Semin Fetal Neonatal Med 2013; 18: 311–321.Google Scholar
4. Boneva, RS, Botto, LD, Moore, CA, Yang, Q, Correa, A, Erickson, JD. Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979–1997. Circulation 2001; 103: 2376–2381.CrossRefGoogle ScholarPubMed
5. Somerville, J. Management of adults with congenital heart disease: an increasing problem. Annu Rev Med 1997; 48: 283–293.Google Scholar
6. Brickner, ME, Hillis, LD, Lange, RA. Congenital heart disease in adults. N Engl J Med 2000; 342: 256–263.Google Scholar
7. Warnes, CA, Liberthson, R, Danielson, GK Jr, et al. Task Force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
8. Webb, GD. Care of adults with congenital heart disease – a challenge for the new millennium. Thorac Cardiovasc Surg 2001; 49: 30–34.CrossRefGoogle ScholarPubMed
9. 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
10. Lane, DA, Lip, GYH, Millane, TA. Quality of life in adults with congenital heart disease. Heart Br Card Soc 2002; 88: 71–75.Google Scholar
11. Lin, EP, Lam, JE, Aronson, LA. Can we improve the outcomes of pediatric congenital heart disease survivors? Int Anesthesiol Clin 2012; 50: 13–25.CrossRefGoogle ScholarPubMed
12. Tong, EM, Sparacino, PS, Messias, DK, Foote, D, Chesla, CA, Gilliss, CL. Growing up with congenital heart disease: the dilemmas of adolescents and young adults [see comment]. Cardiol Young 1998; 8: 303–309.Google Scholar
13. Koot, HM, Wallander, J, editors. Quality of life in child and adolescent illness: concepts, methods and findings. Routledge, New York, 2001; 1: 1--480.Google Scholar
14. Waters, E, Davis, E, Ronen, GM, Rosenbaum, P, Livingston, M, Saigal, S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol 2009; 51: 660–669.Google Scholar
15. Latal, B, Helfricht, S, Fischer, JE, Bauersfeld, U, Landolt, MA. Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatr 2009; 9: 6.Google Scholar
16. Dahan-Oliel, N, Majnemer, A, Mazer, B. Quality of life of adolescents and young adults born at high risk. Phys Occup Ther Pediatr 2011; 31: 362–389.Google Scholar
17. Higgins, JPT, Green, S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available at www.cochrane-handbook.org Google Scholar
18. Liberati, A, Altman, DG, Tetzlaff, J, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. J Clin Epidemiol 2009; 62: e1–e34.Google Scholar
19. Stroup, DF, Berlin, JA, Morton, SC, et al. Meta-analysis of observational studies in epidemiology: a proposal for reporting. JAMA 2000; 283: 2008–2012.Google Scholar
20. Harris, JD, Quatman, CE, Manring, MM, Siston, RA, Flanigan, DC. How to write a systematic review. Am J Sports Med 2013, doi:10.1177/0363546513497567.Google Scholar
21. 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.Google Scholar
22. Landolt, MA, Valsangiacomo Buechel, ER, Latal, B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 2008; 152: 349–355.CrossRefGoogle ScholarPubMed
23. Spijkerboer, AW, EMWJ, Utens, Bogers, AJJC, Verhulst, FC, Helbing, WA. Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease. Int J Cardiol 2008; 125: 66–73.CrossRefGoogle ScholarPubMed
24. Wells, G, Shea, B, O’Connell, D, et al. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses. 3rd Symposium on Systematic Reviews: Beyond the Basics, 2000. http://www.ohri.ca/programs/clinical_epidemiology/oxford.asp.Google Scholar
25. DerSimonian, R, Laird, N. Meta-analysis in clinical trials. Control Clin Trials 1986; 7: 177–188.Google Scholar
26. Berkes, A, Varni, JW, Pataki, I, Kardos, L, Kemény, C, Mogyorósy, G. Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory. Eur J Pediatr 2010; 169: 333–347.CrossRefGoogle ScholarPubMed
27. Brothers, JA, McBride, MG, Marino, BS, et al. Exercise performance and quality of life following surgical repair of anomalous aortic origin of a coronary artery in the pediatric population. J Thorac Cardiovasc Surg 2009; 137: 380–384.Google Scholar
28. 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.CrossRefGoogle ScholarPubMed
29. D’Udekem, Y, Cheung, MMH, Setyapranata, S, et al. How good is a good Fontan? Quality of life and exercise capacity of Fontans without arrhythmias. Ann Thorac Surg 2009; 88: 1961–1969.CrossRefGoogle ScholarPubMed
30. Gierat-Haponiuk, K, Haponiuk, I, Chojnicki, M, Jaworski, R, Bakuła, S. Exercise capacity and the quality of life late after surgical correction of congenital heart defects. Kardiol Pol 2011; 69: 810–815.Google Scholar
31. 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.CrossRefGoogle ScholarPubMed
32. Larsen, SH, McCrindle, BW, Jacobsen, EB, Johnsen, SP, Emmertsen, K, Hjortdal, VE. Functional health status in children following surgery for congenital heart disease: a population-based cohort study. Cardiol Young 2010; 20: 631–640.CrossRefGoogle ScholarPubMed
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; discussion 111.CrossRefGoogle ScholarPubMed
34. Luyckx, K, Missotten, L, Goossens, E, Moons, P. Individual and contextual determinants of quality of life in adolescents with congenital heart disease. J Adolesc Health 2012; 51: 122–128.Google Scholar
35. Manlhiot, C, Knezevich, S, Radojewski, E, Cullen-Dean, G, Williams, WG, McCrindle, BW. Functional health status of adolescents after the Fontan procedure – comparison with their siblings. Can J Cardiol 2009; 25: e294–e300.Google Scholar
36. Pike, NA, Evangelista, LS, Doering, LV, Eastwood, J-A, Lewis, AB, Child, JS. Quality of life, health status, and depression: comparison between adolescents and adults after the Fontan procedure with healthy counterparts. J Cardiovasc Nurs 2012; 27: 539–546.Google Scholar
37. Simko, LC, McGinnis, KA. What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly? J Cardiovasc Nurs 2005; 20: 206–214.Google Scholar
38. Spijkerboer, AW, Utens, EMWJ, De Koning, WB, Bogers, AJJC, Helbing, WA, Verhulst, FC. Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 2006; 15: 663–673.Google Scholar
39. Tahirović, E, Begić, H, Tahirović, H, Varni, JW. Quality of life in children after cardiac surgery for congenital heart disease. Coll Antropol 2011; 35: 1285–1290.Google Scholar
40. 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
41. 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.CrossRefGoogle ScholarPubMed
42. Overgaard, D, Schrader, A-M, Lisby, KH, et al. Patient-reported outcomes in adult survivors with single-ventricle physiology. Cardiology 2011; 120: 36–42.Google Scholar
43. Bisoi, AK, Murala, JSK, Airan, B, et al. Tetralogy of Fallot in teenagers and adults: surgical experience and follow-up. Gen Thorac Cardiovasc Surg 2007; 55: 105–112.Google Scholar
44. Fteropoulli, T, Stygall, J, Cullen, S, Deanfield, J, Newman, SP. Quality of life of adult congenital heart disease patients: a systematic review of the literature. Cardiol Young 2013; 23: 473–485.Google Scholar
45. 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
46. Albrecht, GL, Devlieger, PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977–988.Google Scholar
47. Antonovsky, A. Unraveling the mystery of health: How people manage stress and stay well. Jossey-Bass Publishing, New Jersey, USA, 1987, 218.Google Scholar
48. Rapkin, BD, Schwartz, CE. Toward a theoretical model of quality-of-life appraisal: implications of findings from studies of response shift. Health Qual Life Outcomes 2004; 2: 14.Google Scholar
49. Wang, Q, Hay, M, Clarke, D, Menahem, S. Associations between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health-related quality of life in an ambulatory sample of adolescents with heart disease. Cardiol Young 2014; 24: 126–133.CrossRefGoogle Scholar
50. Imms, C. Occupational performance challenges for children with congenital heart disease: a literature review. Can J Occup Ther 2004; 71: 161–172.Google Scholar
51. Mackie, AS, Islam, S, Magill-Evans, J, et al. Healthcare transition for youth with heart disease: a clinical trial. Heart Br Card Soc 2014; 100: 1113–1118.Google ScholarPubMed
52. Apers, S, Kovacs, AH, Luyckx, K, et al. Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study (APPROACH-IS): rationale, design, and methods. Int J Cardiol 2015; 179: 334–342.Google Scholar
Supplementary material: File

Schrøder supplementary material S1

Schrøder supplementary material
Download Schrøder supplementary material S1(File)
File 103.9 KB
Supplementary material: File

Schrøder supplementary material S2

Schrøder supplementary material

Download Schrøder supplementary material S2(File)
File 47.6 KB
Supplementary material: File

Schrøder supplementary material S3

Schrøder supplementary material

Download Schrøder supplementary material S3(File)
File 26.6 KB
Supplementary material: File

Schrøder supplementary material S4

Schrøder supplementary material

Download Schrøder supplementary material S4(File)
File 126.5 KB