Beyond Surgical Palliation Success: Uncovering the Profound Mental Health Burden Among Children with Hypoplastic Left Heart Syndrome in the United States

A. Mehdizadeh-Shrifi¹, T. Menninger², M. Faateh¹, A. Ramineni³, N. Kasparian², G. Hill², G. Thomas. Chappell⁴, M. Ricci⁵, D. Morales^6
1Division of Cardiothoracic Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio ²Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio ³Cincinnati Children’s Hospital, Cincinnati, Ohio ⁴University of Cincinnati College of Medicine, Cincinnati, Ohio ⁵Division of Cardiothoracic Surgery, Cincinnati Children's Hospital Medical Center, Iowa City, Ohio ⁶Division of Cardiothoracic Surgery, Cincinnati Children's Hospital Medical CenterCincinnati Children's Hospital Medical Center, Cincinnati, Ohio

Purpose: In recent years, major initiatives have assessed the burden of mental health conditions among children. However, longitudinal analysis of incidence rates among children with hypoplastic left heart syndrome (HLHS) is limited. We performed a national analysis of neurodevelopmental and mental health conditions among children on their single-ventricle journey.

Methods: The Pediatric Health Information System (PHIS) registry was queried for pediatric patients (aged < 18 years) with International Classification of Diseases (ICD-9, -10) codes for HLHS from 2004-2024. Patients without their birth admission in the PHIS were excluded.
In total, 15,358 children were identified and stratified by presence of a neurodevelopmental or mental health condition (NMHC), defined using psychiatric disease ICD codes or consistent utilization of psychotropic medication. Date of NMHC onset was considered the first contact with a provider associated with a relevant ICD code, or first administration date of psychotropic drug utilization.
Cumulative NMHC incidence rates, including for mood and anxiety disorders, attention-deficit/hyperactivity disorder (ADHD), and autism spectrum disorder (ASD), were assessed from birth to age 18 years and compared with the general population using publicly available data from the Centers for Disease Control and Prevention (CDC) from 3-17 years.

Results: 4,330(4,330/15,358;28%) had a neurodevelopmental or mental health(NMHC) diagnosis at median age 4-years[IQR:3-9 years]. Children with NMHC were more likely to be Hispanic(NMHC:22%vs.No-NMHC:17%,p < 0.001) and of Black race(NMHC:21%vs.No-NMHC:19%,p < 0.001). They were more likely to have government-insurance(NMHC:59%vs.No-NMHC:55%,p < 0.001), be from low-household-income families(NMHC:29%vs.No-NMHC:21%, p< 0.001), and treated at a low volume center(NMHC:34%vs.No-NMHC:23%,p < 0.001).

Cumulative incidence rates for anxiety (diagnosis age:5 [3-10] years), ADHD (diagnosis age:6 [4-9] years), ASD(diagnosis age: 4[3-10] years, and depressive mood disorders(diagnosis age: 7 [4-12] years) were consistently higher at all ages compared with the general pediatric population (Figure1). Cumulative incidence of anxiety disorder in children with HLHS was 11%[10-13] at age 10-years, 27%[25-29] at 15-years, and 41%[37-44] at 18-years; 4-times higher at 18-years compared with the general population. Incidence of ADHD diagnosis was 7%[6-8] at age 10-years, 20%[19-22] at 15-years, and 33%[29-36] at 18-years; 3-times higher at 18-years compared with the general population. Incidence of ASD diagnosis was 6%[5-7] at age 10-years, 12%[11-13] at 15-years, and 16%[14-19] at 18-years; 8-times higher at 18-years compared with the general pediatric population. Mood disorders had a cumulative incidence of 1%[0-1] at age 10-years, 4%[3-5] at 15-years, and 10%[7-12] at 18-years; 3-times higher at 18-years compared with the general population.

Conclusion: Overall, nearly 30% of children with HLHS were diagnosed with a neurodevelopmental or mental health condition by 18-years, with much higher rates of mood and anxiety disorders, ADHD, and ASD than the general population. Further investigation into equitable strategies to improve mental health among children on their single-ventricle-journey is warranted.

Identify the source of the funding for this research project: No funding.