Attitudes and practices of cardiologists and surgeons who manage HLHS.
OBJECTIVE
We conducted a survey to determine which management options pediatric cardiologists and cardiac surgeons in North America discuss and recommend when counseling parents after the diagnosis of hypoplastic left heart syndrome (HLHS).


METHODS
Pediatric cardiologists and cardiac surgeons across North America were asked to complete an anonymous, Internet-based survey about their attitudes and practices regarding the management of HLHS.


RESULTS
We contacted 1621 pediatric cardiologists and surgeons, of whom 749 (46%) completed the survey. When counseling parents of newborns with HLHS, 99.7% of respondents discussed staged palliative surgery, 67% discussed cardiac transplantation, and 62.2% discussed compassionate care without surgery. Only a minority (14.9%) discussed all of those options. Staged palliative surgery was recommended over cardiac transplantation or compassionate care without surgery by 76.2% of respondents. When counseling parents after prenatal diagnosis of HLHS, 98.8% of respondents discussed continuation of pregnancy with staged palliative surgery after birth, 53.5% discussed continuation of pregnancy with cardiac transplantation after birth, 56.9% discussed continuation of pregnancy with compassionate care after birth, and 74.3% discussed termination of pregnancy. Only 36.5% discussed all of those options. Continuation of pregnancy with staged palliative surgery after birth was recommended over the other options by 56% of respondents.


CONCLUSIONS
Virtually all North American pediatric cardiologists and cardiac surgeons surveyed discuss a surgical intervention when counseling parents about the care of their child or fetus with HLHS. However, only a minority discuss all options. Most physicians recommend staged palliative surgery for management of HLHS.
Prsa
Milan
M
Montreal Children's Hospital, Division of Cardiology, 2300 Tupper St, Montreal, Quebec, H3H 1P3, Canada.
Holly
Crystal D
CD
Carnevale
Franco A
FA
Justino
Henri
H
Rohlicek
Charles V
CV
D001291:Attitude of Health Personnel; D002309:Cardiology; D002648:Child; D013502:General Surgery; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000628:therapy*; D010372:Pediatrics; D010818:Practice Patterns, Physicians'; D011795:Surveys and Questionnaires