title: [Psychosocial adjustment, psychiatric morbidity and quality of life in adolescents and young adults with congenital heart disease].
abstract: OBJECTIVE
  We aimed to study the psychosocial adjustment (PSA), psychiatric morbidity and quality of life of adolescents and young adults with congenital heart disease (CHD) to determine which demographic and clinical variables negatively affect adjustment and which increase resilience.
  
  
  METHODS
  The study included 74 patients with CHD, 41 male and 33 female, aged between 12 and 26 years (mean 18.76±3.86). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding social support, family environment, self-image and physical limitations. A standardized psychiatric interview was conducted, and self-report questionnaires were administered for assessment of PSA (Youth Self Report and Adult Self Report) and quality of life (World Health Organization Quality of Life - Short Version). A caregiver completed an observational version of the PSA questionnaire (Child Behavior Checklist or Adult Behavior Checklist).
  
  
  RESULTS
  Female participants showed more feelings of anxiety and depression (U=952.500; p=0.003), thought problems (U=929.500; p=0.005) and aggressive behavior (U=999.000; p=0.000). They also showed a higher rate of psychopathology. Patients with complex forms of CHD reported more thought problems (U=442.000; p=0.027) and internalization (U=429.000; p=0.021). Compared to the Portuguese population as a whole, participants showed better quality of life in the domains of social relationships (t=2.333; p=0.022) and environment (t=3.754; p=0.000). Patients who had undergone surgery had worse quality of life in physical terms (t=-1.989; p=0.050), social relationships (t=-2.012; p=0.048) and general quality of life (U=563.000; p=0.037), compared to those who were not operated. Better social support was associated with better quality of life in physical terms (t=3.287; p=0.002) and social relationships (t=3.669; p=0.000). Better school performance was also associated with better overall quality of life (U=457.000; p=0.046), less withdrawn behavior (U=812.500; p=0.031), fewer feelings of anxiety and depression (U=854.000; p=0.009), fewer attention problems (U=903.500; p=0.001), and lower scores for internalization (U=817.000; p=0.029) and externalization (U=803.500; p=0.042). Physical limitations had a detrimental effect on quality of life (U=947.500; p=0.001).
  
  
  CONCLUSIONS
  Female participants were more prone to worse psychological adjustment and to psychopathology. Patients with complex forms of CHD showed worse PSA, as they need regular care, which restricts social contact with peers and family and integration in school and leisure activities. Patients who had undergone surgery showed worse quality of life as they often have long hospital stays, during which social activities are restricted, making it more difficult for them to develop a good social support network. They require close medical care, and the restrictions on their activities may be life-limiting. Their sense of survival may also be threatened.
  
  
  CONCLUSIONS
  Patients with CHD appear to be more prone to psychopathology and female patients are more likely to show worse PSA. Social support was shown to play a crucial role in buffering stress and promoting patients' adjustment.
authors.affiliation: Departamento de Psicologia, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal; UNIPSA/CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal.
authors.forename: Rosália
authors.initials: R
authors.lastname: Coelho
authors.forename: Flávio
authors.initials: F
authors.lastname: Teixeira
authors.forename: Ana Margarida
authors.initials: AM
authors.lastname: Silva
authors.forename: Cláudia
authors.initials: C
authors.lastname: Vaz
authors.forename: Daniela
authors.initials: D
authors.lastname: Vieira
authors.forename: Cidália
authors.initials: C
authors.lastname: Proença
authors.forename: Cláudia
authors.initials: C
authors.lastname: Moura
authors.forename: Victor
authors.initials: V
authors.lastname: Viana
authors.forename: José Carlos
authors.initials: JC
authors.lastname: Areias
authors.forename: Maria Emília Guimarães
authors.initials: ME
authors.lastname: Areias
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D005260:Female; D006330:Heart Defects, Congenital / Q000150:complications* / Q000523:psychology*; D006801:Humans; D008297:Male; D001523:Mental Disorders / Q000209:etiology*; D011788:Quality of Life; D012917:Social Adjustment; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Ajustamento psicossocial; Cardiopatias congénitas; Congenital heart disease; Morbilidade psiquiátrica; Psychiatric morbidity; Psychosocial adjustment; Qualidade de vida; Quality of life