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

9.  Database structure  One harvest per year from 2004 to 2007  Two harvests per year beginning in 2008 – Spring and Fall  23 rd 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