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

Cardiology in the Young

Volumn 24, Issue , 2014, Pages 60-65

  Areias, Maria E G ^a,b   Pinto, Catarina I ^a,c   Vieira, Patrícia F ^a,c   Castro, Marta ^a,c   Freitas, Isabela ^a,c   Sarmento, Sofia ^a,c   Matos, Samantha ^a,c   Viana, Victor ^d,e   Areias, José C ^d,f  

^a UNIVERSITY INSTITUTE OF HEALTH SCIENCES IUCS   (Portugal)

^b UNIVERSITY OF COIMBRA   (Portugal)

^c Unidade de Investigac ão de Psicologia e Saúde   (Portugal)

^d University of Porto   (Portugal)

^e UNIVERSITY OF PORTO   (Portugal)

^f Unidade de Investigação e Desenvolvimento Cardiovascular Do Porto   (Portugal)

Author keywords

Congenital heart diseases; Psychiatric morbidity; Psychosocial adjustment; Quality of life; Social support

Indexed keywords

ADOLESCENT; ADULT; ADULT BEHAVIOR CHECK LIST; ADULT SELF REPORT; ANXIETY DISORDER; AORTA COARCTATION; AORTA STENOSIS; ARTICLE; ATRIOVENTRICULAR SEPTAL DEFECT; BODY IMAGE; CHILD; CHILD BEHAVIOR CHECKLIST; CONGENITAL HEART BLOCK; CONTROLLED STUDY; CYANOSIS; CYCLOTHYMIA; DEMOGRAPHY; DISEASE SEVERITY; EDUCATION; FALLOT TETRALOGY; FAMILY SUPPORT; FEMALE; HEART ATRIUM SEPTUM DEFECT; HEART VENTRICLE SEPTUM DEFECT; HUMAN; HUMAN TISSUE; INTERNALIZATION; INTERVIEW; MAJOR CLINICAL STUDY; MAJOR DEPRESSION; MALE; MENTAL DISEASE; MITRAL VALVE ATRESIA; MITRAL VALVE REGURGITATION; MORBIDITY; PANIC; PRESCHOOL CHILD; PREVALENCE; PULMONARY HYPERTENSION; PULMONARY VALVE ATRESIA; PULMONARY VALVE STENOSIS; QUALITY OF LIFE; QUESTIONNAIRE; SCHOOL CHILD; SELF CONCEPT; SELF REPORT; SEMI STRUCTURED INTERVIEW; SEX DIFFERENCE; SOCIAL INTERACTION; SOCIAL SUPPORT; STANDARDIISED PSYCHIATRIC INTERVIEW; WORLD HEALTH ORGANIZATION QUALITY OF LIFE BREF; YOUNG ADULT; YOUTH SELF REPORT; COMORBIDITY; HEART DEFECTS, CONGENITAL; MENTAL DISORDERS; PORTUGAL; PSYCHOLOGIC TEST; PSYCHOLOGY; SEX RATIO;

ADOLESCENT; ADULT; CHILD; COMORBIDITY; EDUCATIONAL MEASUREMENT; FEMALE; HEART DEFECTS, CONGENITAL; HUMANS; INTERVIEW, PSYCHOLOGICAL; MALE; MENTAL DISORDERS; PORTUGAL; PREVALENCE; QUALITY OF LIFE; SEX DISTRIBUTION; SOCIAL SUPPORT; YOUNG ADULT;

EID: 84913546571     PISSN: 10479511     EISSN: 14671107     Source Type: Journal    
DOI: 10.1017/S1047951114001218     Document Type: Article

References (34)

1. Warnes CA. The adult with congenital heart disease born to be bad? J Am Coll Cardiol 2005; 46: 1-8.
2. Brickner M, Hillis L, Lange R. Congenital heart disease in adults. First of two parts. N Engl J Med 2000; 342: 256-263.
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.
4. Hoffman J, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890-1900.
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.
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.
7. Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915-1924.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
22. Endicott J, Spitzer RL. A diagnostic interview: the schedule for affective disorders and schizophrenia. Arch Gen Psychiatry 1978; 35: 837-844.
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.
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.
25. Canavarro M, Simões M, Vaz Serra A, et al. Instrumento de avaliac¸ão da qualidade de vida da Organizac¸ão Mundial de Saúde: WHOQOL-Bref. In: Simões CM, Gonc¸alves M, Almeida L, et al. (eds.). Avaliac¸ão Psicológica: Instrumentos validados para a populac¸ão portuguesa. III. Quarteto Editora, Coimbra, 2007: 77-100.
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.
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.
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.
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.
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.
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.
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.
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.
34. Ministério da Saúde Saúde mental e doenc¸as psiquiátricas, 2004. Retrieved 11 June 2012, from http://www.dgsaude.min-saude.pt/pns/vol2-227.html