Adult congenital heart disease patients understanding of their condition in Central and Southeastern Europe: current status and opportunity for addressing shortfalls and for better care
Authors' conclusion
Significant knowledge gaps exist amongst CESEE ACHD patients regarding their heart condition.
Study context
- Population
- Stable adults with congenital heart disease in Central and South-eastern Europe, 2021–2022
- Participants
- 1,650 adults14 countries
- Outcome
- Baseline knowledge of heart condition
Methodological detailsprospective, multinational (14 Central and South-eastern Europe (CESEE) countries), Responses verified by patients' adults with congenital heart disease (ACHD) physicians
- Prospective
- Multinational (14 CESEE countries)
- Responses verified by patients' ACHD physicians
Main finding
As reported in the abstract
Knowledge of own condition
- No basic knowledge of their congenital heart disease
- 576(34.9%)
- No basic understanding of previous heart procedure/s
- 146(12.2%)
- Considered their life expectancy similar to the general population
- p=0.039
Observational data: associations, not effects.
Further findings
Patient preferences
- Desire to learn more
- 962(59.5%)
- Favoured technological integration in care
- 929(58.1%)
Original publication
Adult congenital heart disease patients understanding of their condition in Central and Southeastern Europe: current status and opportunity for addressing shortfalls and for better care. Eur J Prev Cardiol. Published 16 April 2025. doi:10. 1093/ eurjpc/ zwaf207
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