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HOUSTON – For infants with congenital heart disease, new analyses outlined optimal timing of the second stage of single-ventricle palliation, predictors and consequences of early failure, and how best to communicate center performance to parents.

The three studies were reported here at the Society of Thoracic Surgeons meeting.

In the first, given top billing among congenital heart disease presentations at the meeting, , of the Hospital for Sick Children in Toronto, and colleagues analyzed the Congenital Heart Surgeons' Society's prospective Critical Left Ventricular Outflow Tract Study cohort for all 377 patients who survived to the second stage after the Norwood procedure.

Although the typical age range for that second stage is 2 to 12 months of age, the study using a conditional survival analysis to account for attrition determined that it is safest done after age 3 months but without lengthy delay thereafter for low- or intermediate-risk infants. Infants treated at age 2 months had poorer survival rates over the 24 months after the Norwood procedure than those treated at 4 to 8 months of age, whereas there was little differentiation among those groups.

After 3 months of age, there is little benefit to waiting because treating will eliminate the relatively high inter-stage risk of sudden death, improve growth velocity, decrease resource use, and ease parental anxiety, Meza told the audience.

On the other hand, high-risk infants were likely to fail staged palliation regardless of timing. Early stage-two palliation did not rescue them but showed the steepest drop in survival, with few surviving to 24 months.

Rather, Meza suggested, "early referral for transplantation may maximize survival."

Study discussant , of the University of Nebraska Medical Center in Omaha, noted that this research differs from most prior evidence by stratifying by patients according to their risk level before stage 2 palliation to eliminate confounding effect of patients submitted for early surgery in hopes of rescuing their struggling ventricle.

Shunt Failure

Early shunt failure occurred in 7.3% of children, as defined by that diagnosis or reoperation or related catheter intervention in the same hospitalization, with similar rates across etiologies, , of the Johns Hopkins Hospital, reported at the same session.

Notably, 32% of these children did not survive, compared with an 11% mortality rate in those with no shunt failure in the analysis of 9,172 infants up to 1 year old who got systemic artery- or ventricle-to-pulmonary artery procedures recorded in the STS Congenital Heart Surgery Database from 2010 through 2015.

That high mortality rate "confirms there is no such thing as a simple shunt," noted study discussant , of Texas Children's Hospital in Houston.

On multivariate analysis, significant predictors were:

• Weight for neonates and infants
• Coagulopathy or hypercoagulable state
• "Other" preoperative risk factors aside from shock, renal failure, neurological defect, or mechanical ventilation or circulatory support
• A Norwood ventricle to pulmonary shunt type (versus modified Blalock-Taussig)

With these factors, identifying patients at increased risk might be feasible, Do suggested, and it might help in setting up future trials and quality improvement initiatives.

Parent Preferences

Survival statistics are by far the most important outcome measure parents of children with congenital heart disease want to see, according to a survey of 1,297 parents (nearly all mothers) from three parent groups and a large academic children's medical center.

The next most highly ranked measures were surgeon-specific outcomes and complications data, with fairly uniform opinions across parents' education level, household income, and race or ethnicity, albeit in a fairly homogeneously white, well-educated group.

"How data is presented may be just as important as the data itself," , of the University of Pennsylvania Hospital in Philadelphia, said at a press conference where she presented the findings. "Unfortunately, even though parents want certain data does not mean that we can provide this data in a meaningful way."

Star ratings, which the STS currently uses along with detailed outcomes data summarized across groups of similar-risk procedures, were panned by the parents surveyed. However, , of Johns Hopkins All Children's Hospital in St. Petersburg, Fla., and chair of the STS Workforce on National Databases, suggested that star ratings weren't going to go away, "because not all families can understand confidence intervals."