Key result
Illness acceptance and enrichment link to better well-being in congenital heart disease, whereas engulfment worsens outcomes.
Why the study?
Patients with congenital heart disease vary in how they integrate their condition into their identity, affecting mental health, quality of life, and perceived health, with unclear inter-country variation and associations with patient characteristics and culture.
Cross-Sectional (n=8,415)
Yes
In adults with congenital heart disease, how patients relate their condition to their identity significantly impacts their quality of life and well-being across different cultural contexts.
CHD illness identity varies across countries and links to outcomes; extends framework cross-nationally but leaves open clinical applications.
BACKGROUND: Illness identity refers to the degree to which a severe health condition is integrated into a person's sense of identity. Patients with congenital heart disease (CHD) vary in how they relate their CHD to their identity, which has implications for mental health, quality of life, and perceived health. This study explored inter-country variation in illness identity, and examined associations with patient characteristics and patient-reported outcomes in a large, international sample. METHODS: This study utilized data from the APPROACH-IS-II project which included 8415 patients from 32 countries (collected between 2019 and 2022). Patients completed questionnaires on patient characteristics (i.e., age, sex, marital status, employment, education, ethnicity, NYHA class, and CHD complexity), illness identity, and patient-reported outcomes (i.e., depressive symptoms, anxiety, quality of life, self-perceived [mental and physical] health). National culture was included using Hofstede's cultural dimensions. Data were analyzed using multivariable generalized linear mixed models. RESULTS: Inter-country variation was observed in the illness identity dimensions. Patient characteristics (i.e., sex, age, marital status, employment, education, NYHA class, and CHD complexity) and national culture were related to differences in how patients related their CHD to their identity. Acceptance and enrichment were related to better well-being, quality of life, and self-perceived health, while engulfment and rejection were associated with worse patient-reported outcomes. CONCLUSIONS: Personal and contextual factors were associated with differences in the illness identity dimensions. Moreover, the present study substantiated the unique value of illness identity dimensions in explaining individual differences in well-being, quality of life, and self-perceived health in this population.
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Laere et al. (2026) conducted a cross-sectional in Congenital heart disease (n=8,415). Illness identity dimensions was evaluated on Associations between illness identity dimensions and patient-reported outcomes (well-being, quality of life, self-perceived health). In 8,415 patients with congenital heart disease, illness identity dimensions of acceptance and enrichment were associated with better well-being, while engulfment and rejection correlated with worse outcomes.
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