Study results show that the majority of adult patients with congenital heart disease and their clinicians ignore American College of Cardiology and American Heart Association recommendations that any non-cardiac surgery for these patients should be performed in regionalized centers of expertise.
Children with congenital heart disease (CHD) used to have short life spans. Improved surgical techniques have saved many lives and created a new special care population: adult congenital heart disease (ACHD) patients. ACHD is a risk factor when patients need non-cardiac surgery; perioperative death is the third most common cause of death in ACHD patients. The American College of Cardiology/American Heart Association (ACC/AHA) recommends that ACHD patients schedule any non-cardiac surgery in regionalized centers of expertise. Doing so ensures access to congenital cardiology care, experienced surgeons, and cardiac anesthesiologists. Do American ACHD patients and their healthcare providers actually follow these recommendations?
The September 2014 issue of PLOS ONE highlights a study comparing adults with CHD to children who need non-cardiac care. They found that 74% of ACHD patients ignore the ACC/AHA recommendation.
The researchers drew data from the California Ambulatory Surgery Database, 2005—2011. The data they collected included the distance to the nearest CHD center and distance to the facility where surgery was performed.
ACHD patients were less likely than children with CHD to travel to a specialized center for outpatient non-cardiac surgery. Most ACHD patients (74%) had surgery in a non-specialty center compared to 43% of children. Only 2,741 (26%) ACHD patients had surgery in a CHD center of expertise compared to 6,403 (56.9%) children.
ACHD patients who had surgery at a non-specialty center lived on average 12 miles from the facility. They lived an average of 38 miles away from the nearest CHD center. ACHD patients who had surgery at a CHD center lived on average 23 miles from that center.
Pediatric CHD patients who had surgery at a non-specialty center lived on average 18 miles away, but an average of 35 miles from the nearest CHD center. Pediatric CHD patients who had surgery at a CHD center lived an average of 22 miles from that center.
Distance to the surgical facility appeared to be a factor in the decision about where to have surgery. Distance to care has been identified as a barrier to other types of care also. The authors note that distance alone does not explain the huge discrepancy in the proportion of adults compared to children who travel to a CHD center for care. Other barriers not yet identified must have some effect. The authors indicate that this access issue has public health implications: it represents a failure to achieve adequate regional access to specialized ACHD care for vulnerable patients.