Mental Health Evaluation in Children with Congenital Heart Disease: A Primary Care Approach

Introduction

Children with congenital heart disease (CHD) face a significantly higher risk of mental health problems, including anxiety, depression, and attention-deficit/hyperactivity disorder (ADHD), often associated with early trauma, stress from chronic illness, and neurodevelopmental factors. Early, routine screening and interdisciplinary care are essential for early detection and intervention to enhance long-term quality of life. The purpose of the review is to raise primary care providers' awareness of these significant risks and to offer practical steps that may help identify and address mental health concerns that are associated with poorer long-term quality and health outcomes.

Epidemiology

Congenital heart disease is the most common type of birth defect, occurring in 1% of births per year in the United States, with about 1 in 4 babies having a critical heart defect that requires surgery or other procedures in the first year of life. Furthermore, follow-up procedures may be needed at intervals throughout childhood.¹ Studies reveal that children with CHD face a higher risk of mental health disorders, with over one-third developing conditions such as anxiety, depression, and ADHD. Anxiety, depression, and ADHD occur in about 18% of children with CHD.² Studies have shown sevenfold higher odds of these disorders in children with complex CHD. Attention-deficit/hyperactivity disorder affects about 5% of children with CHD and also occurs at higher rates in those with complex, severe CHD, such as single-ventricle CHD.^2,3 Further complicating these factors is the fact that at least 50% of children with complex CHD may be affected by neurodevelopmental disorders, which include developmental delays and learning disabilities.²

Risk factors propelling these mental health disorders can generally be categorized into 3 areas, namely physiological factors, medically associated trauma, and psychosocial factors. Fetal circulation problems in individuals with CHD may affect their brain development. Medically associated trauma such as frequent, stressful, or painful hospitalizations, coupled with psychosocial factors, such as school absences and social isolation due to time away from friends and family are vivid stressors that increase the risk of mental health conditions in children with CHD. Furthermore, the high occurrence of anxiety, post-traumatic stress disorder, and depression in parents often directly and negatively influences the child’s mental well-being.² Besides a higher rate of intellectual disability and autism spectrum disorder, there is a notable gender factor, such that male children with severe CHD showed higher rates of mental health disorders compared to female children and those with mild or moderate cases.⁴

Clinical Features and Diagnosis

Pediatric anxiety and depression often present as physical complaints, such as headaches and stomachaches, along with intense irritability, social withdrawal, and changes in sleep or appetite, rather than just sadness. Key signs in many school-age patients include school avoidance, low motivation, declining academic performance, and persistent worry. Behavioral changes, such as increased tantrums or defiance, can also indicate underlying distress.⁵ Other clinical signs include poor cognitive functioning and low self-esteem, with feelings of worthlessness. Severe cases may involve self-harm, thoughts of self-destructive behavior, and suicide.⁵ Furthermore, providers should be aware that co-occurrence of anxiety and depression is common among children and adolescents.

Studies indicate that mental health conditions in children with CHD occur in a bimodal pattern, with peaks during early childhood and adolescence.² Therefore, early detection and comprehensive, routine psychological care are essential for this group.⁴ An excellent place to start is to integrate mental health screening and care into routine pediatric and cardiology checkups. Additionally, providers should recognize that uninsured youth and minority populations are much less likely to be diagnosed with or treated for anxiety, depression, or ADHD, irrespective of how severe the condition is. Thus, social workers should be involved very early in the process.²

Relevant screening tools for anxiety disorders, also recommended by the American Academy of Pediatrics (AAP), include the 41-item Screen for Child Anxiety Related Disorders (SCARED), which is validated for ages 8 to 18 years, and the 7-item Generalized Anxiety Disorder (GAD-7), which is validated for adolescents aged 13 and older (Table 1).^6,7

A screening tool for depression is the Patient Health Questionnaire 9 Modified for adolescents (PHQ-9M).^6,8,9 The Ask Suicide-Screening Questionnaire (ASQ) by the National Institute of Mental Health validated for ages 8 to 24 years can be used to assess suicide risk, as it provides screening results and the next step in evaluation. This questionnaire can result in a negative screen with no further suicide-specific intervention indicated based on the screen, unless clinical concern remains. The questionnaire can also result in an acute positive screen with imminent risk, where patients exhibit active suicidal ideations or express current intent to harm themselves, and requires immediate safety precautions, one-to-one observation, removal of potentially dangerous objects, and urgent mental health evaluation.¹⁰ There should be prompt referral to a psychiatrist for worsening mental health.¹⁰

Adolescents with CHD may warrant substance-use screening, particularly given the association between CHD, mental health conditions, and later substance-use concerns. For this reason, confidential screening of all adolescents starting at age 12 should be conducted annually at well-child visits and during appropriate acute or urgent care visits, as recommended by the AAP. This screening can be accomplished using validated, standardized tools such as the Car, Relax, Alone, Forget, Friends/Family, Trouble (CRAFFT 2.1) screening for children ages 11 and above or the National Institute on Drug Abuse Screening to Brief Intervention (S2BI) or Brief Screener for Tobacco, Alcohol, and other Drugs (BSTAD) for ages 12 to 17 years old.^12,13 These tools are brief and practical to use in a busy clinical setting and provide risk scores and suggested actions for the provider.¹³ Providers should also screen for developmental delays in addition to the above.

Table 1. Common Screening Tools for Pediatric Mental Health

Treatment and Management

Worsening mental health should lead to a referral to psychiatry. This referral may involve prescribing cardiac-safe medication for anxiety and depression when appropriate, along with psychotherapy and self-care approaches, like relaxation techniques.³ When applicable, educating parents and encouraging them to seek help for their own mental health is crucial, as their mental well-being directly impacts their child. Behavioral therapy as part of the treatment plan may include child therapy, family therapy, or a combination of both. Parental involvement is key, especially if the school will also be involved.⁵ Cognitive behavioral therapy is an evidence-based psychotherapy used to treat anxiety and depression in children. It focuses on the connection between thoughts, feelings, and behaviors. Cognitive behavioral therapy is highly effective in helping children and adolescents identify, challenge, and replace negative thought patterns with healthier ones, using techniques such as exposure, relaxation, and skill-building.¹⁴

Providers should be familiar with cardiac-friendly anxiety and antidepressants that psychiatry consultations may recommend. According to the AAP, the first-line, cardiac-safe medications in children are typically Selective Serotonin Reuptake Inhibitors (SSRIs), such as Fluoxetine, used for depression, as well as Escitalopram and Citalopram, and Sertraline, which is frequently prescribed for anxiety and obsessive-compulsive disorder.¹⁵ These medications are considered relatively safe for the heart, unlike tricyclic antidepressants, which generally require monitoring for cardiac effects. While SSRIs are regarded as generally safe, it would be prudent for any child with pre-existing heart conditions to have an electrocardiogram to check for QT interval prolongation before starting the medication. Patients should be monitored for potential side effects, including restlessness, insomnia, and, rarely, suicidality.¹⁵

The goal of integrating mental health assessment and mental health specialists into CHD specialty care teams is so that mental health assessment and support become part of comprehensive care for all people with CHD, rather than a separate service offered only in some locations or under specific circumstances.³

Untreated mental health issues in pediatric patients with CHD can have lasting effects. Evidence from general pediatrics shows that mental health conditions are linked to worse physical, educational, and social outcomes during childhood, along with poorer mental health in adulthood.⁴ Untreated mental health concerns in pediatric patients with CHD may worsen functional outcomes and complicate care, particularly in patients who also have neurodevelopmental delays. Potential consequences include poorer medication adherence, reduced quality of life, increased health care use, and greater difficulty managing educational, social, and behavioral challenges.¹¹ Studies show that over 15% of adults with CHD have a substance use disorder, including alcohol, nicotine, and high rates of cannabis use, often using them for self-management of anxiety or pain.¹⁶

Untreated, the lifetime prevalence of anxiety and depression in this population could be as high as 50%.¹¹ Furthermore, individuals with CHD who have transitioned into adulthood may experience new or worsening heart symptoms and may undergo additional surgeries, all of which can lead to financial difficulties and family planning challenges. These issues can strain relationships, contribute to educational or employment challenges, and raise concerns about health and mortality risk.³

Conclusion

Congenital heart disease remains the most common congenital abnormality, and children with CHD present with significantly higher odds of anxiety, mood disorders, substance use disorders, and ADHD compared with those without CHD, resulting in significant negative consequences in the teenage years and as adults if not addressed early and appropriately. Hence, screening for these conditions should begin at an early age and be integrated into both routine primary care and cardiac check-ups so that they can be addressed effectively and, when necessary, a seamless referral to mental health specialists can be made.

AUTHORS
Moronkeji Fagbemi, MD¹ • Anna Fagbemi, MD²

AFFILIATIONS
¹BronxCare Health System Medicine and Psychiatry, Bronx, NY
²Mount Sinai Kravis Children's Hospital, New York, NY

CITATION
Fagbemi M, Fagbemi A. Mental health evaluation in children with congenital heart disease: a primary care approach. Consultant. Published online July 14, 2026. DOI: 10.25270/con.2026.07.000002

DISCLOSURES
The authors report no financial disclosures.

ACKNOWLEDGMENTS:
None.

CORRESPONDENCE
Moronkeji Fagbemi, MD, BronxCare Health System Medicine and Psychiatry, 1285 Fulton Ave., Bronx, New York 10456 USA (email: mfagbemi@bronxcare.org)

References

1. Centers for Disease Control and Prevention. Congenital heart defects. CDC. Updated October 21, 2024. Accessed January 22, 2026. https://www.cdc.gov/heart-defects/data/index.html
2. Gonzalez VJ, Kimbro RT, Cutitta KE, et al. Mental health disorders in children with congenital heart disease. Pediatrics. 2021;147(2):e20201693. doi:10.1542/peds.2020-1693
3. American Heart Association. People born with heart defects need lifetime mental health care, report says. American Heart Association. Published July 14, 2022. Accessed January 24, 2026. https://www.heart.org/en/news/2022/07/14/people-born-with-heart-defects-need-lifetime-mental-health-care-report-says
4. Miles KG, Farkas DK, Laugesen K, Sørensen HT, Kasparian NA, Madsen N. Mental health conditions among children and adolescents with congenital heart disease: a Danish population-based cohort study. Circulation. 2023;148(18):1381-1394. doi:10.1161/CIRCULATIONAHA.123.064705
5. Centers for Disease Control and Prevention. Anxiety and depression in children. CDC. Updated June 9, 2025. Accessed March 28, 2026. https://www.cdc.gov/children-mental-health/about/about-anxiety-and-depression-in-children.html
6. American Academy of Pediatrics. Screening tools: Pediatric Mental Health Minute series. American Academy of Pediatrics. Accessed January 24, 2026. https://www.aap.org/en/patient-care/mental-health-minute/screening-tools/
7. American Academy of Child and Adolescent Psychiatry. Screen for Child Anxiety Related Disorders (SCARED). Accessed January 24, 2026. https://www.aacap.org/App_Themes/AACAP/docs/member_resources/toolbox_for_clinical_practice_and_outcomes/symptoms/ScaredChild.pdf
8. Nandakumar AL, Vande Voort JL, Nakonezny PA, et al. Psychometric properties of the Patient Health Questionnaire-9 modified for major depressive disorder in adolescents. J Child Adolesc Psychopharmacol. 2019;29(1):34-40. doi:10.1089/cap.2018.0112
9. American Academy of Child and Adolescent Psychiatry. PHQ-9: modified for teens. Accessed January 24, 2026. https://www.aacap.org/App_Themes/AACAP/docs/member_resources/toolbox_for_clinical_practice_and_outcomes/symptoms/GLAD-PC_PHQ-9.pdf
10. National Institute of Mental Health. Ask Suicide-Screening Questions (ASQ) toolkit. Accessed January 24, 2026. https://www.nimh.nih.gov/sites/default/files/documents/research/research-conducted-at-nimh/asq-toolkit-materials/asq-tool/screening-tool-asq-nimh-toolkit.pdf
11. Kovacs AH, Brouillette J, Ibeziako P, et al. Psychological outcomes and interventions for individuals with congenital heart disease: a scientific statement from the American Heart Association. Circ Cardiovasc Qual Outcomes. 2022;15(8):e000110. doi:10.1161/HCQ.0000000000000110
12. CRAFFT. https://crafft.org Accessed July 12, 2026
13. National Institute on Drug Abuse. Screening tools for adolescent substance use. National Institute on Drug Abuse. Accessed January 25, 2026. https://nida.nih.gov/nidamed-medical-health-professionals/screening-tools-resources/screening-tools-adolescent-substance-use
14. Oar EL, Johnco C, Ollendick TH. Cognitive behavioral therapy for anxiety and depression in children and adolescents. Psychiatr Clin North Am. 2017;40(4):661-674. doi:10.1016/j.psc.2017.08.002
15. American Academy of Pediatrics. Antidepressants. Pediatric Mental Health Minute series. American Academy of Pediatrics. Accessed March 28, 2026. https://www.aap.org/en/patient-care/mental-health-minute/antidepressants/
16. Shalen EF, McGrath LB, Bhamidipati CM, et al. Substance use disorders are prevalent in adults with congenital heart disease and are associated with increased healthcare use. Am J Cardiol. 2023;192:24-30. doi:10.1016/j.amjcard.2023.01.008

©2026 HMP Global. All Rights Reserved.

Any views and opinions expressed are those of the author(s) and/or participants and do not necessarily reflect the views, policy, or position of Consultant360 or HMP Global, their employees, and affiliates.