Days alive out of health care and hospitalization (DAoH), a novel measure of outcomes in children undergoing cardiovascular surgery, offers advantages over the traditional outcome measure of days alive and out of hospital used in adults, according to a study published Feb. 5 in JACC.

The longitudinal patient outcome of days alive and out of hospital has been validated and endorsed in adult surgical and procedural subspecialties, but not in pediatric populations. For pediatric surgical patients use of health care and survival differs substantially. Thus, Sarah Crook, PhD, et al., sought to determine whether DAoH would better depict the burden on these patients and their families.

The authors described and compared the distribution of DAoH (730 days or date of death minus date of birth, minus the sum of days in health care) over the first two years of life, using New York State Medicaid-enrolled children who underwent initial neonatal or infant cardiac surgery when they were ≤12 months old, between 2006 and 2018. This retrospective analysis used prospectively collected data from the National Death Index and the New York Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources, a data repository linked to New York State Medicaid claims.

Results showed that of 3,542 patients who underwent initial cardiac surgery and were on Medicaid, 2,519 were continuously enrolled for at least two years or until death. DAoH was bimodally distributed, with 10.4% spending <100 days and 21.6% spending >700 DAoH; 5.9% died during their birth hospitalization or in a rehabilitation facility.

Factors significantly associated with outcomes were cardiac disease complexity, age and weight at surgery, prematurity and noncardiac preoperative comorbidities, among other preoperative risk factors (p<0.001).

The authors conclude that "DAoH is an easily reproducible, patient-centered outcome that should be considered for assessment of longitudinal outcomes for neonates and infants undergoing cardiac surgery." Days alive and out of hospital at one year may be a reasonable alternative if outpatient data are not available.

In an accompanying editorial comment, Emily M. Bucholz, MD, PhD, MPH, and John M. Costello, MD, MPH, emphasize that DAoH "resonates with [pediatric] patients and families by capturing both the patient's lived experience and impact on caregivers." They write that "with further refinement and evaluation of DAoH in diverse pediatric populations and practice settings, this measure promises to become a cornerstone for evaluating treatment strategies and communicating meaningful outcomes to patients and families."