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More infants with hypoplastic left heart syndrome were offered surgery over comfort care during the 1990s

Over 90 percent of infants suffering from hypoplastic left heart syndrome (HLHS, underdeveloped left heart), one of the most severe congenital heart defects, die within the first year of life. Between 1988 and 1997, the parents of these infants were more likely to be offered surgery than comfort care for their children. Over that time period, the proportion of infants with HLHS treated with the Norwood procedure (a type of cardiopulmonary bypass surgery) increased from 8 to 34 percent.

If this trend persists, by the year 2004 over 50 percent of infants with HLHS will be treated with the Norwood procedure. The proportion of infants who received heart transplants increased from 1 to 5 percent from 1988 to 1992 and remained at about 5 percent during the period 1993-1997, probably due to the limited availability of appropriate donors. Far fewer transplant than surgery infants died in the hospital (26 vs. 46 percent).

Race/ethnicity, sex, type of medical insurance, and home income did not correlate with treatment choices. Rather, a hospital's experience with the Norwood procedure or heart transplant, organ availability, and parent and physician attitudes toward comfort care influenced treatment, according to a study supported in part by the Agency for Healthcare Research and Quality (National Research Service Award training grant T32 HS00028). Led by Ruey-Kang R. Chang, M.D., M.P.H., of the Harbor-UCLA Medical Center, investigators analyzed treatments and outcomes of infants 1 month old or younger diagnosed with HLHS using 1988-1997 hospital discharge data from over 900 hospitals in 22 States from the nationally representative National Inpatient Sample (a component of AHRQ's Healthcare Cost and Utilization Project).

Overall, 41 percent of 1,986 infants with HLHS died during the study period, with 812 dying in the hospital. The in-hospital mortality rate decreased from 54 percent in 1988 to 38 percent in 1997. Although mortality for the Norwood procedure in many centers remains high, some large, more experienced centers are able to achieve a 5-year survival of 70 percent. The proportion of patients who died in the hospital without surgery decreased over time, while the percentage discharged from the hospital without surgery and receiving only comfort care (between 15 and 25 percent) or transferred to another hospital (about 20 to 30 percent) remained relatively unchanged.

See "Clinical management of infants with hypoplastic left heart syndrome in the United States, 1988-1997," by Dr. Chang, Alex Y. Chen, M.D., and Thomas S. Klitzner, M.D., Ph.D., in the August 2002 Pediatrics 110(2), pp. 292-298.

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