Days Alive Out of Health Care

Background: As pediatric and adult operative mortality improves, longitudinal outcomes beyond survival become increasingly important. “Days alive and out of hospital” is well-studied as a longitudinal, patient-centered outcome in adult populations. However, it has yet to be validated for children, whose healthcare utilization and survival differ from that of adults. Objectives: To evaluate days alive and out of healthcare/hospital as outcomes for neonatal and infant cardiac surgery. Methods: Using linked, locally-held, clinical registry data, the National Death Index, and Medicaid claims from the New York Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources (CHS-COLOUR), we describe and compare the distribution of days alive and out of healthcare/hospital (730 days or date of death minus date of birth, minus the sum of days in healthcare) over two-years for NYS Medicaid-enrolled children who underwent initial neonatal or infant cardiac surgery, 2006-2018. We assess relative contributions of mortality, inpatient, and outpatient days, test impacts of alternate outpatient day weightings, and assess associations with patient characteristics known to be associated with other, established congenital heart surgical outcomes. Results: In total, 2,519 Medicaid enrolled neonates/infants underwent initial cardiac surgery in the first year of life across NYS, 2006-2018. Days alive and out of healthcare (0-730 days) was bimodally distributed, with 10.4% (n=261) spending <100 days alive and out of healthcare, and 21.6% (n=545) spending >700 days. 5.9% (n=149) of children died during their birth admission (zero days alive and out of healthcare). Cardiac disease complexity, weight at surgery, non-cardiac preoperative comorbidities and other preoperative risk factors were all significantly associated with the outcomes (p-values <0.001). When considering only inpatient days, the distribution was more left skewed, as 40% of healthcare days in the second year of life was attributable to outpatient days. Our findings were otherwise largely insensitive to healthcare type weightings. Conclusions: In summary, in this dataset of children with Medicaid coverage, total days alive and out of healthcare is an easily reproducible, patient-centered outcome that should be considered for assessment of longitudinal outcomes for neonates and infants undergoing cardiac surgery. Where outpatient data are not available, days alive and out of hospital might serve as a reasonable alternative.