Lessons Learned from the Society of Thoracic Surgeons (STS) Congenital Database

1. Lessons Learned from the Society of Thoracic Surgeons (STS) Congenital Database September 25, 2015 Robert J. Dabal, MD Associate Professor of Surgery

2. I do not have any relevant financial relationships with any commercial interests to disclose. • While not an expert on the subject, I did serve on the STS Congenital Surgery Database Task Force for about 4 years.

3. Overview • History of the STS database • Applications • Quality Improvement • Research • Limitations • Future Directions

4. History of the STS Database • Founded in 1989 • Quality improvement and safety initiative of the STS • Adult cardiac and thoracic, followed by congenital • Joint effort of the STS Congenital Database Task Force and the Duke Clinical Research Institute (DCRI)

5. History of the STS Congenital Database • Congenital database started in 2002 • 116 North American congenital participants representing 127 hospitals • 124/125 US hospitals, 3/8 Canadian hospitals

6. History of the STS Congenital Database

7. History of the STS Congenital Database

8. History of the STS Congenital Database

9. History of the STS Congenital Database • Database structure • One harvest per year from 2004 to 2007 • Two harvests per year beginning in 2008 – Spring and Fall • 23rd harvest – today • 4 year span – July 1, 2011 to June 30, 2015 • 149,780 operations in last harvest

10. Quality Improvement • How do we compare? • Mortality • Patient mix/ preoperative factors • Operative times • Length of stay • Complications

11. Quality Improvement • Data summary • Risk adjusted mortality • Participant specific outcomes (benchmarks) • Lesion specific outcomes • Missing data summary

12. Quality Improvement • Data Summary • Patient and procedure volume • Discharge mortality • Procedural complexity • By participant center • By age groupings • Frequency of all diagnoses and procedure types

13. Quality Improvement • Risk-adjusted mortality • UAB/Children’s of Alabama 2015 • 250 index operations (high volume center) • 5 total deaths • 2% overall mortality, STS 3.3% • STAT, RACHS-1

14. Quality Improvement • Patient specific outcomes (Benchmark operations)

15. Quality Improvement • Lesion specific outcomes • Demographics • Preoperative factors • Non-cardiac abnormalities • Operative information • Complications • Mortality

16. Quality Improvement • Missing data

17. Research • Initial publications in April 2000 • Total of 65 publications over 15 years • Descriptive (43) • Methodology, risk stratification • Comparative, linkages (9) • Lesion, operation or patient specific outcomes (12)

18. Research • Descriptive (43) • Mostly early papers - methodology • Later papers on definitions, clarifications and risk stratification

19. Research • Comparative, linkages (9) • Other databases, social security, CHSS

20. Research • Congenital Heart Surgeon’s Society • Founded in 1985 by Dr. John W. Kirklin and Dr. Eugene Blackstone • Data center housed at UAB for first decade • Dr. James K. Kirklin, current research chair

21. Research • Lesion, operation or patient specific outcomes (12)

22. Limitations • Definitions change – moving target • Spring Harvest – changes in operative mortality from hospital discharge to database discharge • Fall Harvest – new methodology for determining primary procedure – highest STAT score • Retrospective to include all 4 years

23. Limitations • Missing data • Greater than 10% missing data excluded • Approximately 10% audited per year

24. Limitations • Only 50 of 116 programs participate in the Congenital Cardiac Anesthesia Society (CCAS) module • Over 64,000 anesthetic records • Anesthesia tracking is not available for procedures done by providers with IDs

25. Limitations • Voluntary public reporting began in January 2015 • Available only for programs, not surgeons • Opt-in not available until Spring 2016

26. Limitations • Public reporting • 8 variables in the mortality risk model – age group, primary procedure, weight, prior cardiothoracic operation, non cardiac abnormalities, chromosomal abnormalities, prematurity and 6 preoperative factors

27. Future Directions • More robust data collection • Higher rate of audits • Linkage to other databases – PC4, ACC • Mandatory participation • Better system of public reporting • Limited rankings • Proof of safety – standard of care

28. Summary • The STS congenital database is a valuable resource for clinicians in both the areas of quality improvement and research. • The cumulative experience is growing dramatically and will continue to do so over the next decade. • A successful program can not be evaluated solely on the basis of the STS congenital database.

29. Thank you for your attention