Abstract 15121: Specialty Care Visits and Likelihood of Mortality for Children With Congenital Heart Disease

Introduction: Congenital heart disease (CHD) is the most common birth defect and is estimated to affect nearly 37,500 infants born each year in the United States. Children with CHD have complex, nuanced, healthcare needs and frequently require multi-specialty care. The relationship between specialty care utilization and survival for children with CHD is not well known. Methods: We analyzed all payer claims data (APCD) from Colorado from 2012-2019. Children with CHD were identified by applying harmonized ICD-9-CM and ICD-10-CM diagnoses codes. We included children with CHD < 18 years of age who resided in Colorado, had a documented zip code, and had at least one healthcare claim. Specialty care providers were uniquely identified by their National Provider ID. Mortality was defined by discharge status. We evaluated the relationship between specialty care provider visits and mortality using logistic multivariable modeling. Results: There were 24,784 children diagnosed with CHD in Colorado from 2012 - 2019. Of those, 22,413 (90.4%) children had at least one specialty care visit and 465 (2.1%) died during the study period. Children that died had an average of 60 visits per year, while children that survived had an average of 29 visits (p=<0.001). Children primarily commercially insured by are 25% less likely to experience death (OR: 0.75, 95% CI (0.58 - 0.97), p value: <0.001). Children with greater CHD disease severity or presence of a genetic disorder are nearly 2 times more likely to die, and children in the highest community level quartile are less likely to die. Conclusions: In our cohort of children diagnosed with CHD from 2012 - 2019, there was a significant association with the frequency of specialty care visits and likelihood of death. We found that the primary insurer, level of disease severity, presence of any genetic disorder and community level household income were significantly associated with higher likelihood of death.