Key result
Unexpected ACHD deterioration requires healthcare teams to address both biomedical and psychosocial concerns.
Why the study?
Many adults with congenital heart disease consider themselves cured despite the condition being chronic, leading to potential misperceptions and challenges in care.
Case Report (n=4)
Highlights the importance of recognizing congenital heart disease as a chronic condition rather than a "cured" state, emphasizing the need for ongoing biomedical and psychosocial care.
Supports integrated ACHD care addressing psychosocial needs; leaves open prospective validation in larger cohorts.
As a result of significant advances in diagnostic, surgical, interventional, and pharmacological approaches, up to 95% of infants born with a congenital heart defect now survive into adulthood and there are at least 800,000 adult congenital heart disease patients living in the United States. Unfortunately, many of these individuals consider themselves "cured" or "fixed" and might have the misperception of a cure for a variety of reasons. The "cured" label is problematic and congenital heart disease is most accurately considered a chronic condition. This article outlines the concerns associated with the cured label. This is followed by the presentation of 4 illustrating case studies. Members of an adult congenital cardiology healthcare team must be prepared to address the full spectrum of concerns faced by patients who experience unexpected health deterioration. This spectrum includes both biomedical and psychosocial factors.
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Saidi et al. (2007) conducted a case report in Adult congenital heart disease (n=4). Cured label misperception was evaluated. Four case studies illustrate that adult congenital heart disease is a chronic condition requiring healthcare teams to address both biomedical and psychosocial concerns during unexpected health deterioration.
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