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anxiety, congenital heart disease, depression, heart defects congenital, illness perceptions, quality of life



  1. Fteropoulli, Theodora PhD
  2. Tyagi, Manavi PhD
  3. Hirani, Shashivadan P. PhD
  4. Kennedy, Fiona RGN, RSCN, BSc
  5. Picaut, Nathalie BSc
  6. Cullen, Shay MRCPCHI
  7. Deanfield, John E. BChir MB, MRCP
  8. Newman, Stanton P. DPhil, CPsychol, MRCP(Hon)


Background: There is variability in the impact of adult congenital heart disease (ACHD) on health-related quality of life (HRQoL). A greater insight into the impact of ACHD may be gained from investigating HRQoL in various diagnostic groups and considering the importance of psychosocial risk factors for poor HRQoL.


Objective: We compared the HRQoL of people with ACHD with normative data from the general population and among 4 diagnostic groups and identified risk factors for poor HRQoL in ACHD from a comprehensive set of sociodemographic, clinical, and psychosocial factors.


Methods: We conducted a cross-sectional study with 303 participants from 4 diagnostic groups Simple, Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle who completed measures of illness perceptions, coping, social support, mood, and generic and disease-specific HRQoL. Data were analyzed using 1-sample t tests, analysis of variance, and hierarchical multiple regressions.


Results: There was diminished psychosocial HRQoL in the Simple group compared with the general population. Consistently significant risk factors for poor HRQoL included younger age, a perception of more severe symptoms due to ACHD, depression, and anxiety. Clinical factors were poor predictors of HRQoL.


Conclusions: The findings highlight the need to develop intervention studies aiming to improve HRQoL in people with ACHD and the routine assessment of illness perceptions and mood problems during key periods in people's lives. This will help address patient misconceptions that could be tackled by clinicians or specialist nurses during routine outpatient appointments and identify people in need of psychological support.