Abstract

Background: Due to advances in medical care and treatment of congenital heart disease (CHD), the number of adults with CHD (ACHD) is constantly growing. The psychological situation of ACHD has recently received increasing attention. There is evidence that adaptation to CHD may be affected by psychological factors, especially in how patients integrate their illness into their identities. The present study examined illness identity as a mediator of the association between a self-rated health and emotional distress among ACHD. Materials and Methods: The study used a cross-sectional design. A sample of 229 ACHD (38 ± 12.5 [18–73] years; 45% female) provided background data and completed three questionnaires on self-rated health (EuroQol group's visual analog scale), illness identity (Illness Identity Questionnaire), and emotional distress (Hospital Anxiety and Depression Scale) at the German Heart Center Munich. Serial multiple mediator models were tested using PROCESS macro for SPSS. Results: Perceived health had a direct and indirect effect on emotional distress which was mediated by illness identity (P < 0.05). Compared to all other dimensions of illness identity, engulfment fully mediated the relationship between self-rated health and emotional distress, when adjusted for sociodemographic and clinical confounders. The model explained 42% of variance in total emotional distress (R2 = 0.416). The extent of emotional distress did not differ as a function of CHD complexity. Conclusions: Illness identity emerged as a strong mediating factor between a patient's self-rated health and psychological outcomes. More importance needs to be directed toward assessing a patient's health perception and psychological state, independently of cardiac severity. Based on present findings, targeted psychocardiological interventions should include psychoeducational components and emotion-focused strategies.

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