Choices doctors would make if their infant had hypoplastic left heart syndrome: comparison of survey data from 1999 and 2007

Abstract

Data suggest that despite improved surgical outcomes for infants with hypoplastic left heart syndrome (HLHS), the past two decades have seen little change in parents' decisions whether to choose surgery or palliative treatment without life-prolonging intervention. Data also suggest that doctors' predictions of the choices they would make if their own infant were diagnosed with HLHS do not correlate with their predictions of surgical outcomes. Although previous studies have compared rates of surgery and palliative treatment without life-prolonging intervention over time, no studies have assessed changes in doctors' attitudes. The current study used descriptive and quantitative statistics to compare responses from American pediatric cardiologists and congenital cardiac surgeons from studies conducted in 1999 and 2007. These doctors were asked what choice they believe they would make for their own affected infant. Comparison of responses from 1999 and 2007 showed no difference in the responses of cardiologists: 1999 (44 % surgery, 17 % palliative treatment, 40 % uncertain) versus 2007 (45 % surgery, 20 % palliative treatment, 35 % uncertain). Among surgeons, there was a non-statistically significant trend away from choosing surgery: 1999 (77 % surgery, 5 % palliative treatment, 18 % uncertain) versus 2007 (56 % surgery, 8 % palliative treatment, 36 % uncertain). In conclusion, these analyses suggest that despite improving surgical outcomes, doctors are no more likely to predict that they would choose surgery for their own hypothetical infant with HLHS. Further research is needed to determine what factors influence choice making in the care of infants with HLHS.