Parents’ Preferences Regarding Public Reporting of Outcomes in Congenital Heart Surgery

Abstract

Parents of children with congenital heart disease identify survival statistics, surgeon-specific experience, and complication rates as the most important outcome measures to report publicly. Additionally, parents preferred mortality data to be presented in a procedure-specific format using a numeric procedure-based approach, as opposed to the star rating system.

Development of a Congenital Heart Surgery Composite Quality Metric: Part 1—Conceptual Framework

“…They are generally the most important metric to patients and currently the most widely used type of quality measures [1, 4]. Their use can be limited, however, when the event rate is low or when sample sizes are small [5].…”

“…Recent studies suggest that up to 30% of patients can experience major complications after congenital heart surgery [18]. Parents, providers, and other stakeholders are interested in a child not only surviving surgery but thriving once the child is discharged home free of major morbidities [4]. From a health system and policy perspective, children with major morbidities are also more likely to consume greater health care resources [19].…”

“…Ultimately, the multidisciplinary team elected to focus on outcome measures because recent analyses confirm these are of greatest interest and importance to patients and families [4] and because of the previously described limitations of current structure and process measures. The specific outcome measures selected and rationale are described below.…”

Invited Commentary

“…Dr Irons and colleagues [1] are to be congratulated for their important analysis "Parent preferences regarding public reporting of outcomes in congenital heart surgery." The authors state: "Presented with three display formats for mortality rates, most (89%) identified a numeric procedure-based approach as the best format, and over half identified the hospital star rating system as the worst format."…”

“…Importantly, the analysis by Irons and colleagues [1] does demonstrate that parents desire reporting of outcomes of individual operations, and that parents desire reporting of mortality, and of additional outcome metrics as well. The STS currently reports outcomes based on groupings of operative procedures stratified by the STAT Mortality Categories because of the relatively small numbers in which most individual pediatric cardiac surgical procedures are performed at individual institutions within any given time period.…”