Parents of children with congenital heart disease seek survival data, surgeon experience, complication rates

Parents of children with congenital heart disease would like to see public reporting of survival statistics, surgeon-specific experience and complication rates, according to a recent survey.

The preferences were consistent across differences in education level, annual household income and race/ethnicity.

Researchers from the University of Pennsylvania and the Children’s Hospital of Philadelphia and three patient advocacy groups developed the 43-question survey.

Mallory L. Irons, MD, MBE, from the Hospital of the University of Pennsylvania, presented the results on Jan. 24 during a news conference at the Society of Thoracic Surgeons (STS) annual meeting in Houston.

Jeffrey P. Jacobs, MD, a pediatric heart surgeon at the Johns Hopkins All Children’s Heart Institute in Baltimore, noted that STS began publicly reporting outcomes of cardiothoracic surgeries in adults in 2010. Jacobs is chairman of the STS’s national database workforce.

In 2015, STS started reporting outcomes from its congenital heart surgery database. Today, more than 95 percent of heart surgery programs in the U.S. that perform pediatric surgeries submit data to the STS database and 60 percent have agreed to have the data made available to the public, according to Jacobs.

An STS news release noted that more than 40,000 babies are born with at least one congenital heart defect in the U.S. each year. The STS congenital heart surgery database contains data on 200 unique diagnoses and more than 150 types of surgical procedures.

Currently, STS reports outcomes using a categorical system of star ratings and detailed data with point estimates and confidence intervals, according to Jacobs.

Irons said that STS applies one, two or three stars to hospitals performing pediatric heart surgeries with one star for hospitals performing worse than expected, two stars representing expected performance and three stars for hospitals that exceed expectations.

For this study, the researchers wanted to receive parents’ input on the content of pediatric heart surgery outcomes reports. They sent the survey via email to parents whose children had undergone surgery at the Children’s Hospital of Philadelphia after Jan. 1, 2007. They also sent the survey to members of three parent advocacy groups: Mended Little Hearts, the Pediatric Congenital Heart Association and Sisters by Heart.

The researchers collected complete survey responses from 1,281 people, of whom 92 percent were mothers of children with congenital heart disease. The mean age of the respondents was 37 years old, and nearly all were white. Most of the respondents had an annual household income of greater than $65,000, although Irons said lower-income households were significantly represented.

In addition, approximately half of the children were diagnosed with congenital heart disease prenatally, while two-thirds underwent an initial repair during the first month after birth.

The survey found that parents identified survival statistics, surgeon-specific outcomes and complications as the top three categories of measures to publicly report. The least important were other services offered at each center and the cost of treatment.

“The pattern of rankings holds constant across differences in educational backgrounds,” Irons said. “This pattern also holds constant across differences in household income and across differences in parents’ race or ethnicity.”

In addition, 89 percent of parents preferred a numerical, procedure-based format for hospital-specific mortality rates as the best display format. Most parents said the hospitals star rating was the worst format. Irons said the preferences were consistent across differences in educational backgrounds, annual household income and race/ethnicity.

“The implementation of public reporting in congenital heart surgery is not without challenges,” Irons said. “The development of an optimal reporting system requires a common database in which to collect and analyze data, a robust methodology for risk adjustment and a way to compare performance across a field that is inherently heterogeneous. The ideal public reporting system should be valid as well as easily understood by all stakeholders.

Irons acknowledged that the study had a few limitations, including that the participants represented a homogenous group. She also mentioned that the survey was internet-based and only available in English, so participants without internet access or who could not read English did not participate. In addition, she noted that the study’s retrospective design was a limitation. Further, there were some small cases numbers, which limited some data in a statistically meaningful way.

“While our survey has helped to clarify what types of information parents want and how they want it to be displayed, we must recognize that just because parents want certain data, that does not mean we can provide this in a meaningful, statistically valid way,” Irons said. “Perhaps the most important takeaway from our study is the importance of involving parents and other stakeholders in the design and planning of methodologies for public reporting of congenital heart surgery outcomes. Ultimately, the optimal platform will represent a melding of what parents want and what is statistically meaningful and valid.”