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Longitudinal Follow Up Challenges In Congenital Heart Disease Outcomes
Kate Taylor, MPH, Michelle Mizrahi, MD, Elizabeth McCullum, PhD, Carlos M. Mery, MD, MPH, Charles D. Fraser, Jr., MD.
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA.

Objective(s): Tracking congenital heart disease (CHD) outcomes is imperative. The Society of Thoracic Surgeons (STS) historically reported 30-day post-operative mortality status, but now requires reporting of 1-year survival. We evaluated the realities of tracking long-term outcomes, hypothesizing this will be a challenging universal undertaking.
Methods: A list of CHD patients with an index operation between 07/31/2018 and 02/01/2019 was generated from the electronic medical record (EMR). International charity patients were excluded. Patient demographics, mortality status and dates of the last inpatient and outpatient clinical encounter were recorded. Contact was attempted via phone twice to ascertain mortality status. Patients known to be deceased were not contacted. Descriptive, univariate, and multivariable logistic regression statistics were utilized.
Results: A sample of 104 patients was identified. EMR review and phone calls determined 78 (75%) patients to be alive, 2 (2%) to be deceased, and 24 (23%) with an undetermined mortality status. 49 (49%) of those eligible were able to be contacted by phone. Patients with an unknown mortality status were more likely to be white (OR=4.73, 95%CI:1.25-24.59, p=0.04), not receive Medicaid (OR=0.10, 95%CI:0.02-0.34, p<0.001), and have been readmitted within 30-days of their index operation (OR=4.68, 95%CI:1.02-23.40, p=0.05), adjusted for patient age at surgery.
Conclusions: Even in the context of a resource-replete, medium-volume program, 100% 1-year follow-up is challenging. Our evaluation with EMR review and two phone calls allowed us to determine 77% of patients’ long-term status. These data imply that additional tracking tools, including unique patient identifiers, may be needed for optimized outcomes assessment.


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