青少年和年轻成人先天性心脏病的心理社会远期转归

doi:10.7499/j.issn.1008-8830.2013.10.002

Abstract
Figure/Table
References(45)
Related Citation (15)
Read Tracking
Download Tracking

Download: PDF (1238 KB)
Export: BibTeX | EndNote (RIS) Supporting Info

Abstract OBJECTIVE: Congenital heart disease (CHD) is a chronic illness with a high frequency in the worldwide population, and is normally diagnosed at birth or in uterus. Because of better conditions in diagnosis and early medical and surgical treatment, patients have survival rates of 90% and go further and further in life, facing different challenges in life cycle. In this study, we tested the effects of different demographic, clinical and psychosocial variables on the perception of quality of life (QOL), on psychosocial adjustment (PSA) and psychiatric morbidity (PM) of adolescents and young adults with CHD. We aimed to evaluate QOL, PM and PSA of adolescents and young adults with CHD and to determine which variables (demographic, clinical, and psychosocial) play a role in buffering stress and promoting resilience and which ones have a detrimental effect. METHODS: The study enrolled 150 CHD patients (87 males and 63 females), 12 to 26 years (17.45±3.373 years). The participants were interviewed regarding social support, family educational style, self-image, demographic information and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed self-reports questionnaires for assessment of QOL (WHOQOL-BREF) and PSA (YSR/ASR). ReESULTS: We found a 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (1.53±0.804 year). The perception of QOL of CHD patients is better compared to the Portuguese population in the social relationships, environmental, physical and general dimensions. However, it is worse in female CHD patients and patients with poor academic performance and social support as well as in patients with complex or cyanotic CHD, moderate-to-severe residual lesions and physical limitations, and undergoing surgery. All of these variables, except presence of cyanosis, are also associated to a worse PSA. CONCLUSIONS: Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.

	Service

	E-mail this article
	Add to my bookshelf
	Add to citation manager
	E-mail Alert
	RSS
	Articles by authors
	Maria Emília Guimaraes Areias
	Catarina I. Pinto
	Patrícia F.Vieira
	Flávio Teixeira
	Rosália Coelho
	Isabela Freitas
	Samantha Matos
	Marta Castro
	Sofia Sarmento
	Victor Viana
	Jorge Quintas
	José

Key words： Congenital heart disease Risk factor Quality of life Psychosocial adjustment Psychiatric morbidity

Cite this article:

Maria Emília Guimaraes Areias,Catarina I. Pinto,Patrícia F.Vieira et al. Long term psychosocial outcomes of congenital heart disease in adolescents and young adults[J]. CJCP, 2013, 15(10): 810-816.

URL:

http://www.zgddek.com/EN/10.7499/j.issn.1008-8830.2013.10.002 OR http://www.zgddek.com/EN/Y2013/V15/I10/810

[1]	Karsdorp PA, Everaerd W, Kindt M, et al. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis [J]. J Pediatr Psychol, 2007, 32: 527-541.
[2]	Nousi D, Christou A. Factors affecting the quality of life in children with congenital heart disease[J]. Health Sci J, 2010, 4: 94-100.
[3]	Hoffman JI, Kaplan S. The incidence of congenital heart disease[J]. J Am Coll Cardiol, 2002, 39: 1890-1900.
[4]	Luyckx K, Missotten L, Goossens E, et al. Individual and contextual determinants of quality of life in adolescents with congenital heart disease[J]. J Adolesc Health, 2012, 51: 122-128.
[5]	Apers S, Luyckx K, Rassart J, et al. Sense of coherence is a predictor of perceived health in adolescents with congenital heart disease: A cross-lagged prospective study[J]. Int J Nurs Stud, 2013, 50: 776-785.
[6]	Marelli AJ, Mackie AS, Ionescu-Ittu R, et al. Congenital heart disease in the general population: changing prevalence and age distribution[J]. Circulation, 2007,115: 163-172.
[7]	Loup O, von Weissenfluh C, Gahl B, et al. Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery[J]. Eur J Cardiothorac Surg, 2009, 36: 105-111.
[8]	Fredriksen PM, Mengshoel AM, Frydenlund A, et al. Follow-up in patients with congenital cardiac disease more complex than haemodynamic assessment[J]. Cardiol Young, 2004, 14: 373-379.
[9]	Baumeister H, Harter M. Prevalence of mental disorders based on general population surveys[J]. Soc Psychiatry Psychiatr Epidemiol, 2007, 42: 537-546.
[10]	Marino BS, Uzark K, Ittenbach R, et al. Evaluation of quality of life in children with heart disease[J]. Progress in Pediatric Cardiology, 2010, 29: 131-138.
[11]	Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease[J]. Qual Life Res, 2005, 14: 1915-1924.
[12]	Gortmaker SL, Walker DK, Weitzman M, et al. Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents[J]. Pediatrics, 1990, 85: 267-276.
[13]	Moons P, Van Deyk K, Marquet K, et al. Individual quality of life in adults with congenital heart disease: a paradigm shift[J]. Eur Heart J, 2005, 26: 298-307.
[14]	Moons P, Van Deyk K, Marquet K, et al. Profile of adults with congenital heart disease having a good, moderate, or poor quality of life: a cluster analytic study[J]. Eur J Cardiovasc Nurs, 2009, 8: 151-157.
[15]	Goldbeck L, Melches J. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease[J]. Cardiol Young, 2006, 16: 67-75.
[16]	Latal B, Helfricht S, Fischer JE, et al. Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review[J]. BMC Pediatr, 2009, 9: 6.
[17]	Krol Y, Grootenhuis MA, Destree-Vonk A, et al. Health related quality of life in children with congenital heart disease[J]. Psychol Health, 2003, 18: 251-260.
[18]	Rose M, Kohler K, Kohler F, et al. Determinants of the quality of life of patients with congenital heart disease[J]. Qual Life Res, 2005, 14: 35-43.
[19]	Spijkerboer AW, Utens EM, De Koning WB, et al. Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease[J]. Qual Life Res, 2006, 15: 663-673.
[20]	Fekkes M, Kamphuis RP, Ottenkamp J, et al. Health-related quality of life in young adults with minor congenital heart disease[J]. Psychol Health, 2001, 16: 239-250.
[21]	Rietveld S, Mulder BJ, van Beest I, et al. Negative thoughts in adults with congenital heart disease[J]. Int J Cardiol, 2002, 86: 19-26.
[22]	Kovacs AH, Saidi AS, Kuhl EA, et al. Depression and anxiety in adult congenital heart disease: predictors and prevalence[J]. Int J Cardiol, 2009, 137: 158-164.
[23]	Bellinger DC, Newburger JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease[J]. Progress Pediatr Cardiol, 2010, 29: 87-92.
[24]	Gaynor JW, Nord AS, Wernovsky G, et al. Apolipoprotein E genotype modifies the risk of behavior problems after infant cardiac surgery[J]. Pediatrics, 2009, 124: 241-250.
[25]	van Rijen EH, Utens EM, Roos-Hesselink JW, et al. Longitudinal development of psychopathology in an adult congenital heart disease cohort[J]. Int J Cardiol, 2005, 99: 315-323.
[26]	Spijkerboer AW, Utens EM, Bogers AJ, et al. Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease[J]. Int J Cardiol, 2008, 125: 66-73.
[27]	Majnemer A, Limperopoulos C, Shevell M, et al. Developmental and functional outcomes at school entry in children with congenital heart defects[J]. J Pediatr, 2008, 153: 55-60.
[28]	Limbers CA, Emery K, Uzark K. Factors associated with perceived cognitive problems in children and adolescents with congenital heart disease[J]. J Clin Psychol Med Settings, 2013, 20(2): 192-198.
[29]	Spijkerboer AW, Utens EM, Bogers AJ, et al. Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease[J]. Int J Cardiol, 2008, 125: 66-73.
[30]	Casey FA, Sykes DH, Craig BG, et al. Behavioral adjustment of children with surgically palliated complex congenital heart disease[J]. J Pediatr Psychol, 1996, 21: 335-352.
[31]	Shillingford AJ, Glanzman MM, Ittenbach RF, et al. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease[J]. Pediatrics, 2008, 121: e759-767.
[32]	Kovacs AH, Sears SF, Saidi AS. Biopsychosocial experiences of adults with congenital heart disease: review of the literature[J]. Am Heart J, 2005, 150: 193-201.
[33]	Hovels-Gurich HH, Konrad K, Skorzenski D, et al. Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect[J]. Pediatr Cardiol, 2007, 28: 346-354.
[34]	McCusker CG, Doherty NN, Molloy B, et al. A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families[J]. J Pediatr Psychol, 2012, 37: 1089-1103.
[35]	Hesselbrock V, Stabenau J, Hesselbrock M, et al. A comparison of two interview schedules. The Schedule for Affective Disorders and Schizophrenia-Lifetime and the National Institute for Mental Health Diagnostic Interview Schedule[J]. Arch Gen Psychiatry, 1982, 39: 674-677.
[36]	Canavarro M, Simoes M, Vaz Serra A, et al. Instrumento de avaliacao da qualidade de vida da Organizacao Mundial de Saude: WHOQOL-Bref[M]//Simoes CM, Goncalves M, Almeida L, et al. eds. Avaliacao psicologica: Instrumentos validados para a populacao portuguesa. III. Coimbra: Quarteto Editora, 2007: 77-100.
[37]	Achenbach T, Rescorla L. Manual for the ASEBA Adult Forms & Profiles[M]. Burlington, VT: University of Vermont, Research Center for Children, Youth, & Families, 2003.
[38]	Achenbach TM, Rescorla LA. Manual for the ASEBA School-Age Forms & Profiles[M]. Burlington, VT: University of Vermont, Research Center for Children, Youth, & Families, 2001.
[39]	van Rijen EH, Utens EM, Roos-Hesselink JW, et al. Medical predictors for psychopathology in adults with operated congenital heart disease[J]. Eur Heart J , 2004, 25: 1605-1613.
[40]	Birkeland AL, Rydberg A, Hagglof B. The complexity of the psychosocial situation in children and adolescents with heart disease[J]. Acta Paediatr, 2005, 94: 1495-1501.
[41]	Hülser K, Dubowy KO, Knobl H, et al. Developmental outcome and psychosocial adjustment in children after surgery for congenital heart disease during infancy[J]. J Repro Infant Psycho, 2007, 25: 139-151.
[42]	Olsen M, Sorensen HT, Hjortdal VE, et al. Congenital heart defects and developmental and other psychiatric disorders: a Danish nationwide cohort study[J]. Circulation, 2011, 124: 1706-1712.
[43]	Utens EM, Bieman HJ, Verhulst FC, et al. Psychopathology in young adults with congenital heart disease. Follow-up results[J]. Eur Heart J, 1998, 19: 647-651.
[44]	Cox D, Lewis G, Stuart G, et al. A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease[J]. J Psychosom Res, 2002, 52: 65-68.
[45]	Ministerio da Saude (2004). Plano Nacional de Saude 2004-2010, Saude mental e doencas psiquiátricas[EB/OL]. Available online: http://www.dgsaude.min-saude.pt/pns/vol2_227.html (acessed 11 Jun 2012).