The end-of-life experience for adults with congenital heart disease: Resource utilization, functional decline, and circumstances surrounding death

Emerging adulthood: The ageing problem of congenital heart disease

“…11 The impact of discontinuity of care is significant, with patients more likely to present as an emergency to critical care and are at three times the risk of presenting in an acute state requiring urgent surgical or catheter-based intervention. [12][13][14][15][16]…”

“…Discontinuity also appears to be a particular problem with patients with ‘simple’ heart defects and those who have previously not required surgical intervention 11 . The impact of discontinuity of care is significant, with patients more likely to present as an emergency to critical care and are at three times the risk of presenting in an acute state requiring urgent surgical or catheter‐based intervention 12–16 …”