Background: While children and youth in foster care (CYFC) have greater healthcare needs generally, data are lacking in heart disease. We characterize CYFC with heart disease, assess the impacts of being in foster care on outcomes, and examine validity of ICD-10 code Z62.21 for identification of CYFC in administrative data. Methods: In this single-center, retrospective cohort study of all cardiac surgical patients (<18yo) admitted 2017-2022, CYFC were identified using institutional Electronic Medical Records via natural language processing or ICD codes, with confirmation by chart review. Demographics, medical characteristics and outcomes of CYFC were compared to children not in foster care. Generalized linear models assessed associations with primary outcomes of mortality at current follow-up (logit link) and total hospital days (log link), controlling for clinical factors and length of follow-up. We separately added Child Opportunity Index (COI) and payer to models. This cohort was then studied in the administrative pediatric health information system (PHIS) dataset to calculate ICD code sensitivity and specificity. Results: Of 4,431 cardiac surgical patients, 67 (1.5%) were in foster care. CYFC did not have significantly higher mortality (9% vs 5.8%), 30-day readmission or cardiac reoperation, number of complex chronic conditions (CCC), RACHS-2, or distance from center compared to non-CYFC. CYFC had lower COI (median 61 vs 72, p=0.016) and more Medicaid coverage (87% vs 40%, p<0.001). Length of stay after index surgery was similar; however, cumulative hospital days during the study were significantly higher for CYFC (median 22 [IQR 10,45] vs 12 [6,27], p<0.001). Adjusting for RACHS-2, CCC, age, readmission, reoperation, and follow-up duration, CYFC had higher odds of mortality (2.7 [95%CI 1.0,6.9] p=0.046) and more total hospital days (p=0.008). With COI or payer in the model, CYFC was not associated with mortality but remained an independent risk factor for more total hospital days. Only 16/67 (23.9%) of CYFC were coded with the Z62.21 in PHIS, yielding sensitivity of 21.9% (95%CI 13.1,33.1), and specificity of 100% (99.9,100). Conclusion: CYFC with heart disease have a relative social disadvantage, greater hospital resource utilization, and long-term mortality despite similar illness severity. Improved capture of foster care status in administrative data is needed to guide future studies and reduce health disparities for the vulnerable population of CYFC.
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