Parents Identify Most Important Congenital Heart Disease Outcome Measures

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Survival statistics, surgeon-specific experience, and complication rates were the most important categories of outcome measures.
Survival statistics, surgeon-specific experience, and complication rates were the most important categories of outcome measures.

HealthDay News – Parents of children with congenital heart disease feel that survival statistics, surgeon-specific experience, and complication rates are the most important outcome measures for public reporting, according to a study presented at the annual meeting of the Society of Thoracic Surgeons in Houston.

Mallory L. Irons, MD, from the Hospital of the University of Pennsylvania in Philadelphia, and colleagues developed a 43-item questionnaire to gauge parent attitudes regarding the format and content of an ideal public reporting scheme. The authors then surveyed parents of children with congenital heart disease, with complete data from 1281 survey responses.

The researchers found that parents identified survival statistics, surgeon-specific experience, and complication rates as most important when asked to rank categories of outcome measures or other type of information to include in an optimal public reporting scheme. Most parents (89%) identified a numerical procedure-based approach as the best format for hospital-specific mortality rates; 60% reported that the hospital star rating system was the worst potential format to display mortality data.

"Our research emphasized that parents have valuable opinions about the content and format of the information that should be provided," Dr Irons said in a statement. "How data are presented may be more important than the data itself, with the type of visual display employed affecting the degree to which parents correctly interpret the data presented."

Reference

Irons ML, Gaynor JW, Spray TL, Feudtner C. Parent preferences regarding public reporting of outcomes in congenital heart surgery: a cross-sectional survey of parents of children with congenital heart disease. Abstract presented at: 53rd annual meeting of the Society of Thoracic Surgeons; January 21-25, 2017; Houston, TX.

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