Date of Award
Spring 5-2023
Document Type
Thesis (Ph.D.)
Department or Program
Health Policy and Clinical Practice
Abstract
Background. This dissertation examined children with congenital heart disease (CHD) in Colorado (CO) from 2012 to 2019. Specifically, three studies were conducted that investigated state prevalence rates, related comorbidities and geographic factors associated with access and outcomes for children with CHD. Methods. A descriptive, retrospective 8-year analysis of CO All Payer Claims Data (APCD). Children were identified by administrative diagnoses codes (CD-9-CM and ICD-10-CM). The population includes all children with CHD (aged < 18 years on Jan 1, 2012) with a documented CO zip-code and at least one healthcare encounter in CO. Coexisting comorbidities were defined by the Pediatric Chronic Complex Condition (PCCC) and Children with Disabilities (CWD) algorithms. Providers were identified by their National Provider ID (NPI) and categorized by APCD. Geographic access was calculated using a network analysis of the road distance weighted by travel speeds from the geographic centroid of every ZIP code in CO to that of the geocoded provider address. Outcomes were defined by Berenson-Eggers Type of Service (BETOS) codes. Multivariable logistic regression and mixed effect negative binomial regression models were used. Results. The first study found a significantly higher prevalence rate compared to the national average. A total of 1,566,328 children received care in CO from 2012 – 2019. Of those, 30,512 children had at least one CHD diagnosis, comprising 1.9% (95% CI: 1.93 – 1.97) of the pediatric population. Over half of the children with CHD also had at least one complex chronic condition and 11% had a genetic diagnosis. The second study identified travel burden to specialty care providers and odds of mortality, controlling for potential confounders among children with CHD. Results indicated that for the children who survived, 62.8% of their total specialty care visits were <30 minutes away, compared to 59.7% among those who died. Children with CHD who died had a consistently higher proportion of visits that required greater travel to care. The third study assessed travel burden to primary care providers and rate of emergency department visits, controlling for potential confounders. There were 94,997 ED visits over the study period. Most ED visits were experienced by children who spent < 30 minutes on average traveling to their PCP. Children with CHD who traveled 60 minutes to 3 hours for their are had a higher rate of ED visits than those who lived closer (IRR: 1.20; p value: 0.008). Conclusions. The current study is the first population-level analysis of pediatric CHD in the US. These studies found a higher CHD prevalence than previously reported studies and a high comorbidity burden. Longer travel time is associated with higher likelihood of death and emergency department encounters, which may indicate limited geographic access to services. This research provides a comprehensive assessment of the significant and complex health burden that children with CHD frequently experience. These findings can improve the provision and accessibility of care for this unique population.
Recommended Citation
Parker, Devin M., "Population-based estimates of children with congenital heart disease and quantifying their burden of care" (2023). Dartmouth College Ph.D Dissertations. 143.
https://digitalcommons.dartmouth.edu/dissertations/143