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Lessons to Be Learned From Hypoplastic Left Heart Syndrome

Alexander A. Kon, MD; Lynn Ackerson, PhD; Bernard Lo, MD

Arch Pediatr Adolesc Med. 2004;158:436-441.

Background  Hypoplastic left heart syndrome (HLHS) is a life-threatening congenital cardiac defect. Three mutually exclusive management options exist: the Norwood palliative procedure, cardiac transplantation, and comfort care without surgical intervention.

Objectives  To assess which management options are presented to parents of infants with HLHS, and to determine what factors influence physicians' recommendations.

Design  Cross-sectional survey.

Setting  Fourteen of the largest pediatric cardiac surgery centers in the United States.

Participants  Attending physicians in neonatology, cardiology, critical care practice, and cardiac surgery.

Intervention  A survey was distributed asking physicians what options they present to parents of infants with HLHS and what their recommendations are in general, as well as physician perceptions of HLHS outcomes and demographic information.

Main Outcome Measures  Which options physicians discuss and which they recommend.

Results  Of 454 eligible physicians 257 (57%) responded to the survey, of which 110 make treatment recommendations to parents. Neonatologists were least likely to recommend surgery. Physicians who recommend surgery recommend procedures performed at their own institution over those performed elsewhere (odds ratio, 2.80; 95% confidence interval, 2.24-3.51). Twenty-six percent of physicians do not discuss nonsurgical management, and 25% of those at centers that do not perform cardiac transplantation do not discuss this option. The recommendations physicians make to parents are poorly associated with their predictions of postoperative outcomes.

Conclusions  Physician recommendations to parents are poorly associated with their estimates of outcomes, and some physicians recommend the treatment preferred at their own institution over other options even when they predict better outcomes from another approach. Further, many physicians do not disclose all reasonable management options to parents of infants with HLHS. These findings raise doubts as to whether parents are given adequate information to make truly informed decisions.

From the Department of Pediatrics and Program in Bioethics, University of California, Davis, Sacramento (Dr Kon); the Kaiser Research Foundation, Oakland, Calif (Dr Ackerson); and the Program in Medical Ethics, University of California, San Francisco (Dr Lo).

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