title: Long term psychosocial outcomes of congenital heart disease (CHD) in adolescents and young adults.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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 (M: 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).
  
  
  RESULTS
  We found an 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (M: 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 complex forms of CHD, in cyanotic patients, in moderate-to-severe residual lesions, in patients submitted to surgery and in patients with physical limitations. All of these variables, except presence of cyanosis, are also associated to a worse PSA. Social Support is very important in improving QOL of patients in all dimensions as well as academic performance.
  
  
  CONCLUSIONS
  Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Maria Emília Guimarães
authors.initials: ME
authors.lastname: Areias
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Catarina I
authors.initials: CI
authors.lastname: Pinto
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Patrícia F
authors.initials: PF
authors.lastname: Vieira
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Flávio
authors.initials: F
authors.lastname: Teixeira
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Rosália
authors.initials: R
authors.lastname: Coelho
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Isabela
authors.initials: I
authors.lastname: Freitas
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Samantha
authors.initials: S
authors.lastname: Matos
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Marta
authors.initials: M
authors.lastname: Castro
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Sofia
authors.initials: S
authors.lastname: Sarmento
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Victor
authors.initials: V
authors.lastname: Viana
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: Jorge
authors.initials: J
authors.lastname: Quintas
authors.affiliation: 1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
authors.forename: José C
authors.initials: JC
authors.lastname: Areias
keywords: Congenital heart disease (CHD); psychiatric morbidity (PM); psychosocial adjustment (PSA); quality of life (QOL); risk factor
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