Evaluating Hospital Resource Utilization for Hypoplastic Left Heart Syndrome Through Linkage of a Clinical Registry...

Area of Science:

• Pediatric Cardiology
• Health Services Research
• Congenital Heart Disease

Background:

• Resource utilization for hypoplastic left heart syndrome (HLHS) in early childhood is not well-established.
• HLHS requires complex, multi-stage surgical interventions and lifelong specialized care.

Purpose of the Study:

• To estimate hospital resource utilization, including costs and length of stay, for a contemporary cohort of HLHS patients from birth through the first six years of life.
• To assess the feasibility of linking clinical registry data with administrative databases for resource utilization studies.

Main Methods:

• Linked the National Pediatric Cardiology Quality Improvement (NPC-QIC) clinical registry with the Pediatric Health Information Systems (PHIS) database.
• Included patients discharged from their Norwood procedure between October 1, 2009, and September 30, 2015.
• Calculated estimated costs and length of stay for all inpatient episodes across the first six years of life.

Main Results:

• Linked 973 patients (82.8%) from 33 centers; complete cost data were available for 38%.
• Resource use was highest in the first year of life: average cost of $450,124 and 79 hospital days.
• Total average cost in the first six years was $651,006 with 110 hospital days. Norwood, Stage 2, and Fontan procedures averaged $239,936, $143,292, and $77,198 respectively.

Conclusions:

• Linking NPC-QIC and PHIS data is a feasible method for evaluating resource utilization in HLHS.
• Hospital resource utilization for HLHS is substantial, particularly in the first year of life, and remains high throughout early childhood.
• Findings highlight the significant economic burden of HLHS and inform healthcare resource planning.