Abstract
Background: Due to advances in the diagnosis and treatment of congenital heart disease (CHD), the number of adults who are surviving with congenital heart disease (ACHD) is constantly growing. Until recently, the psychological effects of CHD had been widely neglected. Current research provides evidence for an increased risk of emotional distress in ACHD. The concept of illness identity attempts to explain how patients experience and integrate their CHD into their identities. The present study investigated illness identity in relation to clinical parameters and psychological functioning. Psychometric properties of the German version of the Illness Identity Questionnaire (IIQD) were examined. Methods: Self-reported measures on illness identity and psychological functioning (HADS-D) were assessed in a representative sample of 229 ACHD (38 ± 12.5 (18−73) years; 45% female) at the German Heart Center Munich. Descriptive analyses and multiple regression models were conducted. Confirmatory factor analysis was performed to validate the IIQD. Results: The IIQD demonstrated good reliability. The originally-postulated four-factor structure could not be replicated. Anatomic disease complexity and functional status significantly influenced illness identity. Illness identity accounted for unique variances in depression and anxiety: Maladaptive illness identity states (i.e., , engulfment and rejection) were associated with higher emotional distress, whereas adaptive illness (i.e., , acceptance and enrichment) identity states were linked to lower emotional distress. Conclusions: Illness Identity emerged as a predictor of emotional distress in ACHD. Findings raise the possibility that interventions designed to target a patient’s illness identity may improve psychological well-being and cardiac outcomes in ACHD.
Highlights
Due to advances in medical care and treatment of congenital heart defects over the last decades. the population of adults with relatively normal life expectancy is continuously growing
The primary aim of the present study was to examine the psychological situation of are surviving with congenital heart disease (ACHD) by (I) validating the German version of the illness identity questionnaire (IIQD) with a representative sample of ACHD at the German Heart Center Munich, (II) investigating potential differences in illness identity states with regard to sociodemographic and clinical variables, (III) exploring unique relationships between the four illness identity states and emotional distress in terms of anxiety and depression
The functional class (FC) of ACHD was determined according to Perloff’s classification, which classifies ACHD based on their symptomatic restrictions [24]
Summary
Due to advances in medical care and treatment of congenital heart defects (from CHD) over the last decades. the population of adults with relatively normal life expectancy is continuously growing. Due to advances in medical care and treatment of congenital heart defects (from CHD) over the last decades. Due to advances in the diagnosis and treatment of congenital heart disease (CHD), the number of adults who are surviving with congenital heart disease (ACHD) is constantly growing. Psychometric properties of the German version of the Illness Identity Questionnaire (IIQD) were examined. Methods: Self-reported measures on illness identity and psychological functioning (HADS-D) were assessed in a representative sample of 229 ACHD (38 ± 12.5 (18−73) years; 45% female) at the German Heart Center Munich. Conclusions: Illness Identity emerged as a predictor of emotional distress in ACHD. Findings raise the possibility that interventions designed to target a patient’s illness identity may improve psychological well-being and cardiac outcomes in ACHD
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