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Quality of life of patients with congenital heart diseases

Published online by Cambridge University Press:  08 June 2011

Ana M. Silva ,
Cláudia Vaz ,
Maria E. G. Areias ,
Daniela Vieira ,
Cidália Proença ,
Victor Viana ,
Cláudia Moura  and
José C. Areias
Ana M. Silva
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Cláudia Vaz
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Maria E. G. Areias*
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Daniela Vieira
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Cidália Proença
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Victor Viana
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
Cláudia Moura
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
José C. Areias
Affiliation:
Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Cardiology Service, Hospital São João, Porto Medical School, Gandra, Portugal
*
Correspondence to: M. E. Areias, Department of Psychology, University of Porto, Instituto Superior de Ciências da Saúde do Norte (CESPU), Rua Central de Gandra, 1317, 4585-116 Gandra Paredes, Portugal. Tel: 00 351 22 415 71 00; Fax: 00 351 22 415 71 02; E-mail: [email protected]
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Abstract

Objectives

To assess the perception of the quality of life of adolescents and young adults with congenital heart disease and to examine the variables that have a negative impact on it and that add a resilience effect.

Methods

A total of 22 male and 18 female patients, aged 12–26 years, of whom 27 were admitted to surgery and 13 were not, participated in this study. All patients had complete medical records and were interviewed once; demographic and clinical data were collected, and patients filled a questionnaire on quality of life, the WHOQOL-BREF, and underwent an interview on social support, educational style, self-image, functional limitations, and emotional adjustment.

Results/Conclusions

Our patients showed a better perception of quality of life than did the general population, on the basis of psychological, social relationship and environment scales. Older patients hold a better perception of quality of life on the psychological scale. Cyanosis did not show any significant impact over perception of quality of life decay; however, the number of surgical procedures and the persistence of moderate-to-severe residual injuries had considerable detrimental effect. Social support had an impact on increasing resilience, promoting adjustment to illness. Several factors may play a role in adjustment to congenital heart disease, either improving the perception of quality of life or worsening it. We may conclude that some buffer variables on congenital heart disease may play roles in increasing the perception of quality of life of patients during their lifetime, social support probably explaining why the perception of quality of life is better than in the normal population. The number of surgeries and the moderate-to-severe residual injuries, however, reverted that effect.

Keywords

Adolescents and young adultsrisk and resilience factorspsychosocial aspects
Type
Original Articles
Information
Cardiology in the Young , Volume 21 , Issue 6 , 28 October 2011 , pp. 670 - 676
Copyright
Copyright © Cambridge University Press 2011

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References

1.Almeida, JP. Impacto dos factores psicológicos associados à adesão terapêutica, ao controlo metabólico e à qualidade de vida em adolescentes com diabetes tipo 1. Tese de Doutoramento. Universidade do Minho, 2003.Google Scholar
2.Horowitz, ES. Insuficiência cardíaca nas cardiopatias congénitas do adulto (CCA). Revista da Sociedade de Cardiologia do Rio Grande do Sul 2004; 3: 1–3.Google Scholar
3.Vaz, DD, Silva, CH, Gomes, LF (s/d). Qualidade de vida em crianças e adolescentes com cardiopatia congénita por meio do CHQ-PF 50-Child Health Questionnaire. Recuperado em 18 Março, 2009, de http://www.propp.ufu.br/revistaeletronica/.../vida2005/qualidadeGoogle Scholar
4.Moons, P, Van Deyk, K, Marquet, K, et al. Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 2005; 26: 298–307.CrossRefGoogle ScholarPubMed
5.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: 1–10.CrossRefGoogle ScholarPubMed
6.Lawoko, S, Soares, JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 2003; 12: 665–666.CrossRefGoogle ScholarPubMed
7.Goldbeck, L, Melches, J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915–1924.CrossRefGoogle ScholarPubMed
8.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
9.Krol, Y, Grootenhuis, MA, DestrÉe-Vonk, A, Lubbers, LJ, Koopman, HM, Last, BF. Health related quality of life in children with congenital heart disease. Psychol Health 2003; 18: 251–260.CrossRefGoogle Scholar
10.Lane, DA, Lip, GYH, Millane, TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71–75.CrossRefGoogle ScholarPubMed
11.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.CrossRefGoogle ScholarPubMed
12.Fekkes, M, Kamphuis, RP, Ottenkamp, J, et al. Health-related quality of life in young adults with minor congenital heart disease. Psychol Health 2001; 16: 239–250.CrossRefGoogle Scholar
13.Moons, P, Van Devk, K, Marquet, K, et al. Qualiy of life in adults with congenital heart disease: better than expected? Gedrag & Gezondheid: Tijdschrift voor Psychologie en Gezondheid 2006; 34: 209–222.Google Scholar
14.Vaz Serra, A, Canavarro, MC, Simão, MR, et al. Estudos psicométricos do instrumento de avaliação da Qualidade de Vida da Organização Mundial de Saúde (WHOQOL-Bref) para Português de Portugal. Psiquiatria Clínica 2006; 27: 41–49.Google Scholar
15.Landolt, MA, Buechel, ERV, Latal, B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 2008; 152: 349–355.CrossRefGoogle ScholarPubMed
16.Coelho, M, Ribeiro, J. Influência do suporte social e do coping sobre a percepção subjectiva de bem-estar em mulheres submetidas a cirurgia cardíaca. Psicologia Saúde & Doença 2000; 1: 79–87.Google Scholar
17.Majnemer, A, Limperopoulos, C, Shevell, MI, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. Health and well being of children with congenital cardiac malformation, and their families, following open-heart surgery. Cardiol Young 2006; 16: 157–164.CrossRefGoogle ScholarPubMed
18.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 ScholarPubMed
19.Ternestedt, BM, 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 atrial septal defect. Pediatr Cardiol 2001; 22: 128–131.CrossRefGoogle ScholarPubMed
20.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: 1060–1067.CrossRefGoogle ScholarPubMed
21.Daliento, L, Mapelli, D, Volpe, B. Measurement of cognitive outcome and quality of life in congenital heart disease. Heart 2006; 92: 569–574.CrossRefGoogle ScholarPubMed