Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-26T15:25:27.139Z Has data issue: false hasContentIssue false
  • English
  • Français

Living with CHD: quality of life (QOL) in early adult life

Published online by Cambridge University Press:  27 August 2014

Maria E. G. Areias ,
Catarina I. Pinto ,
Patrícia F. Vieira ,
Marta Castro ,
Isabela Freitas ,
Sofia Sarmento ,
Samantha Matos ,
Victor Viana  and
José C. Areias
Maria E. G. Areias*
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Coimbra, Portugal
Catarina I. Pinto
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Patrícia F. Vieira
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Marta Castro
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Isabela Freitas
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Sofia Sarmento
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Samantha Matos
Affiliation:
Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal UNIPSA, Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal
Victor Viana
Affiliation:
Department of Paediatrics Cardiology, Hospital São João, Porto Medical School, University of Porto, Portugal Faculty of Nutrition, University of Porto, Portugal
José C. Areias
Affiliation:
Department of Paediatrics Cardiology, Hospital São João, Porto Medical School, University of Porto, Portugal Unidade de Investigação Cardiovascular, Porto, Portugal
*
Correspondence to: M. E. G. Areias, Department of Psychology, Instituto Superior de Ciências da Saúde – Norte, Rua Central de Gandra, 1317, 4585-116 GANDRA PRD, Portugal. Tel:+91 930 97 66, +22 415 71 86; Fax:+22 415 71 02; E-mail: metega@sapo.pt
Get access Rights & Permissions [Opens in a new window]

Abstract

Aims

The aim of this study was to assess the quality of life, psychiatric morbidity, and the psychosocial adjustment of adolescents and young adults with CHD, and determine which variables play a role in buffering stress and promoting resilience and which ones have a detrimental effect; and to investigate the situation on school performance and failures, social and family support, physical limitations, and body image of these patients.

Methods

The study enrolled 137 CHD patients (79 male), with age ranging from 12 to 26 years old (M=17.60±3.450 years). The patients were interviewed regarding social support, family educational style, self-image, demographic information, and physical limitations. They responded to questions in a standardised psychiatric interview (SADS-L) and completed self-reported questionnaires for the assessment of quality of life (WHOQOL-BREF) and psychosocial adjustment (YSR/ASR).

Results

We found a 19.7% lifetime prevalence of psychopathology in our patients (27.6% in female and 13.9% in male). Of them, 48% had retentions in school (M=1.61 year±0.82). The perception of quality of life in CHD patients is better compared with the Portuguese population in the social relationships and environmental dimensions. However, it is worse in complex forms of CHD than in moderate-to-mild ones, in cyanotic versus acyanotic patients, in moderate-to-severe versus mild residual lesions, in patients submitted versus those not submitted to surgery, in patients with versus without physical limitations, and patients who have need for medication versus those who do not. Social support is very important in improving quality of life of patients in all dimensions as well as academic performance.

Conclusions

Female patients and patients with poor academic performance and poor social support have worse psychosocial adjustment and perception of quality of life.

Keywords

Psychosocial adjustmentpsychiatric morbiditycongenital heart diseasesquality of lifesocial support
Type
Original Article
Information
Cardiology in the Young , Volume 24 , Issue S2: Fetal cardiovascular medicine: current perspectives and future hopes , October 2014 , pp. 60 - 65
Copyright
© Cambridge University Press 2014 

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.Google Scholar
2.Brickner, M, Hillis, L, Lange, R. Congenital heart disease in adults. First of two parts. N Engl J Med 2000; 342: 256–263.Google Scholar
3.Claessens, P, Moons, P, Casterlé, B, Cannaerts, N, Budts, W, Gewilling, 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
4.Hoffman, J, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.Google Scholar
5.Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, Rahme, E, Pilote, L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–172.Google Scholar
6.Loup, O, 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
7.Goldbeck, L, Melches, J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915–1924.Google Scholar
8.Gottmaker, S, Walker, D, Weitzman, M, Sobol, A. Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatrics 1990; 85: 267–276.Google Scholar
9.Rose, M, Köhler, K, Köhler, F, Sawitzky, B, Fliege, H, Klapp, B. Determinants of quality of life of patients with congenital heart disease. Qual Life Res 2005; 14: 35–43.Google Scholar
10.Spijkerboer, A, Utens, E, De Koning, W, Bogers, A, Helbing, W, Verhulst, F. 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
11.Fekkes, M, Kamphuis, R, Ottenkamp, J, et al. Health-related quality of life in young adults with minor congenital heart disease. Psychol Health 2001; 16: 239–250.Google Scholar
12.Moons, P, 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
13.Rietveld, S, Mulder, BJ, Van Beest, I, et al. Negative thoughts in adults with congenital heart disease. Int J Cardiol 2002; 86: 19–26.Google Scholar
14.Bellinger, DC, Newburger, JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 2010; 29: 87–92.CrossRefGoogle Scholar
15.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.Google Scholar
16.Moons, P, Deyk, K, Marquet, K, Bleser, L, 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.Goldbeck, L, Melches, J. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol Young 2006; 16: 67–75.CrossRefGoogle ScholarPubMed
18.Latal, B, Helfricht, S, Fischer, J, Bauersfeld, U, Landolt, M. 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
19.Krol, Y, Grootenhuis, M, Destrée-Vonk, A, Lubbers, L, Koopman, H, Last, B. Health related quality of life in children with congenital heart disease. Psychol Health 2003; 18: 251–260.CrossRefGoogle Scholar
20.Gaynor, JW, Nord, AS, Wernovsky, G, et al. Apolipoprotein E genotype modifies the risk of behavior problems after infant cardiac surgery. Pediatrics 2009; 124: 241–250.Google Scholar
21.Spijkerboer, AW, Utens, EMWJ, 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.Google Scholar
22.Endicott, J, Spitzer, RL. A diagnostic interview: the schedule for affective disorders and schizophrenia. Arch Gen Psychiatry 1978; 35: 837–844.CrossRefGoogle ScholarPubMed
23.Hesselbrock, V, Stabenau, J, Hesselbrock, M, et al. A comparison of two interview shedules. The Schedulenfor Affective Disorders and Schizophrenia-Lifetime and the National Institute for Mental Health Diagnostic Interview Schedule. Arch Gen Psychiatry 1982; 39: 674–677.CrossRefGoogle Scholar
24.Skevington, SM, Lotfy, M, O’Connell, KA. The World Health Organization’s WHOQOL-BREF 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.CrossRefGoogle Scholar
25.Canavarro, M, Simões, M, Vaz Serra, A, et al. Instrumento de avaliação da qualidade de vida da Organização Mundial de Saúde: WHOQOL-Bref. In: Simões CM, Gonçalves M, Almeida L, et al. (eds.). Avaliação Psicológica: Instrumentos validados para a população portuguesa. III. Quarteto Editora, Coimbra, 2007: 77–100.Google Scholar
26.Achenbach, T, Rescorla, L. Manual for the ASEBA adult forms & profiles. University of Vermont, Research Center for Children, Youth and Families, Burlington, VT, 2003.Google Scholar
27.Achenbach, T, Rescorla, L. Manual for the ASEBA school-age forms & profiles. University of Vermont, Research Center for Children, Youth and Families, Burlington, VT, 2001.Google Scholar
28.Van Rijen, EHM, Utens, EMWJ, Roos-Hesselink, JW, et al. Medical predictors for psychopathology in adults with operated congenital heart disease. Eur Heart J 2004; 25: 1605–1613.Google Scholar
29.Birkeland, AL, Rydberg, A, Hägglöf, B. The complexity of the psychosocial situation in children and adolescents with heart disease. Acta Paediatr 2005; 94: 1495–1501.Google Scholar
30.Hülser, K, Dubowy, KO, Knobl, K, Meyer, A. Developmental outcome and psychosocial adjustment in children after surgery for congenital heart disease during infancy. J Reprod Infant Psychol 2007; 25: 139–151.CrossRefGoogle Scholar
31.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
32.Utens, EM, Bieman, HJV, Verhulst, FC, Meijboom, FJ, Erdman, RA, Hess, J. Psychopathology in young adults with congenital heart disease – follow-up results. Euro Heart J 1998; 19: 647–651.Google Scholar
33.Cox, D, Lewis, G, Stuart, G, Murphy, K. A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease. J Psychosom Res 2002; 52: 65–68.Google Scholar
34.Ministério da Saúde Saúde mental e doenças psiquiátricas, 2004. Retrieved 11 June 2012, from http://www.dgsaude.min-saude.pt/pns/vol2_227.htmlGoogle Scholar