Mallory L Irons1, J William Gaynor2, Thomas L Spray2, Chris Feudtner3. 1. Division of Cardiovascular Surgery, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania. Electronic address: mallory.irons@uphs.upenn.edu. 2. Division of Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. 3. Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Abstract
BACKGROUND: Calls for public reporting of outcomes in congenital heart surgery have led to several different reporting schemes, including a star rating system and benchmark procedure-specific mortality data tables. Important unanswered questions remain about the optimal format and content of public reporting of congenital heart surgery outcomes. METHODS: In conjunction with three parent advocacy groups, we developed a questionnaire to gauge parents' attitudes regarding the format and content of an "optimal" public reporting scheme. Parents were solicited for participation through email lists of members of parent advocacy groups and from a cohort of parents whose children had undergone an STS benchmark procedure of the Society of Thoracic Surgeons at the Children's Hospital of Philadelphia after January 1, 2007. RESULTS: The 1,297 responses received provided complete data for analysis. Nearly all the participants were mothers of children with congenital heart disease, and most were white. About half of the children were diagnosed prenatally, and 63% underwent initial repair of the defect in the neonatal period. Parents identified survival statistics, surgeon-specific experience, and complication rates as most important. Presented with three display formats for mortality rates, most parents (89%) identified a numeric procedure-based approach as the best format, and more than half identified the hospital star rating system as the worst format. CONCLUSIONS: 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.
BACKGROUND: Calls for public reporting of outcomes in congenital heart surgery have led to several different reporting schemes, including a star rating system and benchmark procedure-specific mortality data tables. Important unanswered questions remain about the optimal format and content of public reporting of congenital heart surgery outcomes. METHODS: In conjunction with three parent advocacy groups, we developed a questionnaire to gauge parents' attitudes regarding the format and content of an "optimal" public reporting scheme. Parents were solicited for participation through email lists of members of parent advocacy groups and from a cohort of parents whose children had undergone an STS benchmark procedure of the Society of Thoracic Surgeons at the Children's Hospital of Philadelphia after January 1, 2007. RESULTS: The 1,297 responses received provided complete data for analysis. Nearly all the participants were mothers of children with congenital heart disease, and most were white. About half of the children were diagnosed prenatally, and 63% underwent initial repair of the defect in the neonatal period. Parents identified survival statistics, surgeon-specific experience, and complication rates as most important. Presented with three display formats for mortality rates, most parents (89%) identified a numeric procedure-based approach as the best format, and more than half identified the hospital star rating system as the worst format. CONCLUSIONS: 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.
Authors: Sara K Pasquali; David M Shahian; Sean M O'Brien; Marshall L Jacobs; J William Gaynor; Jennifer C Romano; Michael G Gaies; Kevin D Hill; John E Mayer; Jeffrey P Jacobs Journal: Ann Thorac Surg Date: 2018-09-15 Impact factor: 4.330
Authors: Devyani Chowdhury; Jonathan N Johnson; Carissa M Baker-Smith; Robert D B Jaquiss; Arjun K Mahendran; Valerie Curren; Aarti Bhat; Angira Patel; Audrey C Marshall; Stephanie Fuller; Bradley S Marino; Christina M Fink; Keila N Lopez; Lowell H Frank; Mishaal Ather; Natalie Torentinos; Olivia Kranz; Vivian Thorne; Ryan R Davies; Stuart Berger; Christopher Snyder; Arwa Saidi; Kenneth Shaffer Journal: J Am Heart Assoc Date: 2021-10-08 Impact factor: 5.501