Document Type


Journal Title

Orphanet Journal of Rare Diseases

Publication Date

Fall 10-22-2015




BACKGROUND: Quantifying resource utilization in the inpatient care of congenital heart diease is clinically relevant. Our purpose is to measure the investment of inpatient care resources to achieve survival in hypoplastic left heart syndrome (HLHS), and to determine how much of that investment occurs in hospitalizations that have a fatal outcome, the mortality-related resource utilization fraction (MRRUF).

METHODS: A collaborative administrative database, the Pediatric Health Information System (PHIS) containing data for 43 children's hospitals, was queried by primary diagnosis for HLHS admissions of patients ≤21 years old during 2004-2013. Institution, patient age, inpatient deaths, billed charges (BC) and length of stay (LOS) were recorded.

RESULTS: In all, 11,122 HLHS admissions were identified which account for total LOS of 277,027 inpatient-days and $3,928,794,660 in BC. There were 1145 inpatient deaths (10.3%). LOS was greater among inpatient deaths than among patients discharged alive (median 17 vs. 12, p < 0.0001). BC were greater among inpatient deaths than among patients discharged alive (median 4.09 × 10(5) vs. 1.63 × 10(5), p < 0.0001). 16% of all LOS and 21% of all BC were accrued by patients who did not survive their hospitalization. These proportions showed no significant change year-by-year. The highest volume institutions had lower mortality rates, but there was no relation between institutional volume and the MRRUF.

CONCLUSIONS: These data should alert providers and consumers that current practices often result in major resource expenditure for inpatient care of HLHS that does not result in survival to hospital dismissal. They highlight the need for data-driven critical review of standard practices to identify patterns of care associated with success, and to modify approaches objectively.

MeSH Headings

Adolescent, Child, Child, Preschool, Female, Health Resources, Hospital Mortality, Hospitalization, Humans, Hypoplastic Left Heart Syndrome, Infant, Infant, Newborn, Length of Stay, Male, Mortality, Young Adult



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This work is licensed under a Creative Commons Attribution 4.0 License.

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