Steps and Stairs

              It is not enough to stare up the steps; we must step up the stairs. – Vance Havner

In May 2019, the New York Times published the first of several articles describing a dysfunctional congenital heart care program.¹ Outcomes for children undergoing heart surgery at the hospital had been worse than expected, and multiple physicians and administrators had been aware of the problem for an unacceptably long time prior to instituting solutions.  Several similar stories have appeared in the recent past.^2-6 Though the circumstances recounted in these various reports were surprising to journalists, the public, parents, and other stakeholders, many experienced cardiac practitioners were not as shocked.

That cardiac specialists were unsurprised by the various reports is remarkable and troubling, because it is reflective of a specialty which has been incompletely successful in self-monitoring and self-improvement.  This is not to say that there has been no progress in this area. Certainly, the now widely embraced principle of transparency, manifest as public reporting, represents a step forward.  Another effort towards quality improvement is the development of “performance” ranking of centers, such as the annual US News and World Report survey.  However, reporting and ranking serve only to describe, often imperfectly, recent circumstances, and thus are merely a necessary first step.  Their greatest value is to guide the second phase, the implementation of improvements and solutions which lead to better outcomes.

Obstacles and Solutions

The provision of care to patients with congenital heart disease is among the most complex endeavors in medicine, with a well understood relationship between volume and quality of care.  In this context, dilution of expertise and experience associated with an excess number of programs represents a major barrier to improvement. As a solution, regionalization of congenital cardiac care has recently been advocated in the US,⁷ after salutary effects of this approach elsewhere.⁸  A reduction in overall operative mortality of 12-15% has been conservatively estimated, and is felt achievable without significant reduction in patient access.⁹

Even with regionalization, congenital heart programs will continue to manage relatively small numbers of patients with each type of congenital heart defect.  Traditional methods of sharing advancements in medical knowledge, based on single center experience, have significant limitations which have greatly inhibited progress.  To overcome these problems, multicenter learning initiatives must be undertaken. As an example of such a project, the National Pediatric Cardiology-Quality Improvement Collaborative has recently initiated a “surgical coaching” project to facilitate mutual site visits to enhance sharing of collective knowledge.

Another obstacle to quality improvement is the current method of provision of information to the public. Often this has taken the form of overly simplistic presentation of complex data, frequently substituting clarity for accuracy. The concept of ranking is also remarkably artificial. It is unreasonable to summarize the performance and capabilities of a congenital heart center with a single number, which convey the erroneous concept that a center with a score of 89 is somehow inferior to a center with a score of 90. Yet such scoring systems are used to decide where to seek care for a loved one and whether the center is “better” this year than last.

Finally, while the concept of self-assessment is crucial to any attempt at improvement, self-reporting is perhaps not entirely adequate.  As an alternative, an externally-organized, disinterested peer-conducted auditing process would seem preferable. With so-called LOSA inspections, there is precedent for such an approach in aviation, an industry to which congenital heart care is sometimes compared.¹⁰ There is even precedent for such an approach in health care, as anyone who has ever been through a visit by the Joint Commission can attest.  If restaurants are not allowed to inspect themselves, why do we think this is a good idea for congenital heart programs?

In conclusion, we have been staring up the steps by becoming ever better at measuring performance.  It is now time to begin stepping up the stairs by better organizing our delivery “system” (regionalization), sharing knowledge more efficiently, and finding better ways to assess and communicate our performance.

References:

1. https://www.nytimes.com/interactive/2019/05/30/us/children-heart-surgery-cardiac.html
2. https://projects.tampabay.com/projects/2018/investigations/heartbroken/all-childrens-heart-institute/
3. https://www.palmbeachpost.com/article/20150602/NEWS/812066453
4. https://www.cnn.com/2013/08/03/health/kentucky-hearts-hospital/index.html
5. https://www.seattleweekly.com/news/tearing-at-childrens-heart/
6. https://extras.denverpost.com/news/news0301b.htm
7. Backer CL, Pasquali SK, Dearani JA. Improving National Outcomes in Congenital Heart Surgery: The Time Has Come for Regionalization of Care. 2020 Mar 24;141(12):943-945
8. Lundström NR,Berggren H, Björkhem G, Jögi P, Sunnegârdh J. Centralization of pediatric heart surgery in Sweden. Pediatr Cardiol. 2000 Jul-Aug;21(4):353-7.
9. Welke KF, Pasquali SK, et al. Regionalization of Congenital Heart Surgery in the United States. Semin Thorac Cardiovasc Surg. 2020 Spring;32(1):128-137.
10. https://www.faa.gov/about/initiatives/maintenance_hf/losa/