Publication
A Hard Start: Early, Intensive Healthcare Utilization for Children with Critical Congenital Heart Disease
Ellis D, Hall M, Blume E, Wolfe J, Snaman J, Berry J · Circulation · 2024
Introduction/Background: Critical congenital heart disease CCHD, requiring surgical intervention in the neonatal period, confers significant morbidity including high healthcare utilization, symptom burden, and psychosocial difficulties. Families also face the challenge of numerous decisions surrounding early, high-risk operative and procedural interventions. Pediatric palliative care PPC can facilitate goals of care/decision-making conversations and as such has great potential to improve the experiences of and outcomes for children with CCHD and their families. Goals/Aims: We examined the healthcare utilization of children with CCHD and how this differed by sociodemographic and clinical factors, as well as PPC consultation. Method(s): We performed a retrospective review of infants with one of five CCHD (anomalous pulmonary venous return APVC, single ventricle disease SVD, tetralogy of Fallot TOF, transposition of the great arteries TGA, and truncus arteriosus TA enrolled from birth to 2 years old between 2016 and 2020 in Medicaid in 12 U.S states participating in the Merative Marketscan Medicaid. Healthcare utilization included inpatient stays, outpatient and emergency visits, pharmacy encounters, and surgical interventions SI, and were summed to determine total healthcare days HD. PPC consultation was also assessed. Multivariable log-normal models assessed patient factors [including complex chronic conditions CCC associated with total HD. Result(s): The cohort included 615 children 28% non-White, 46% female, and 67% with at least two other CCC who underwent a median of 8 SI and had 69 HD during the two-year follow up period. SVD patients had the highest utilization and intervention burden (median 117.5 HD, 11.5 SI, followed by TOF (82 HD, 10 SI, TGA 58 HD, 8 SI, APVC 51 HD, 7 SI, and TA 47.5 HD, 3.5 SI (p<0.001. Having three or more CCC was associated with greater HD for all conditions (p<.001. PPC consultation was uncommon 4.5%, but greatest in SVD 13% (p<0.001. Conclusion(s): Children with CCHD, especially those with SVD and greater medical complexity, had significant healthcare utilization including numerous SI. PPC consultation occurs for few patients. Given the clinical and psychosocial implications of frequent decision making and medicalization for children with CCHD, greater PPC engagement should be investigated.
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