IPM Take
Congenital heart disease has one of modern medicine’s clearest success stories: children who once faced very limited survival are increasingly living through childhood and into adulthood.
That success changes the definition of what good cardiac care should achieve.
The American Heart Association has already identified psychiatric disorders as the most common comorbidity among people with congenital heart disease and has called for mental health professionals to be integrated into multidisciplinary CHD teams. More recent population data strengthen the case. In a Danish cohort of 16,473 children with CHD, more than 35% were diagnosed with or treated for a neurodevelopmental or mental health condition.
The implementation gap is now becoming harder to ignore. Screening for anxiety, depression, attention problems or trauma is useful only if cardiology services also have the staff, referral pathways and reimbursement structures to respond.
The next step in congenital heart care may therefore be less about adding another test and more about changing what a cardiac team looks like.
Executive Summary
Mental health and neurodevelopmental conditions are common among children with congenital heart disease, with risk shaped by medical complexity, repeated hospitalisation, neurological factors, family circumstances and socioeconomic conditions. An American Heart Association scientific statement recommends integrating psychological care into multidisciplinary CHD services rather than treating mental health as an optional addition.
The evidence has continued to develop. A 2025 Danish population-based study of 16,473 children with CHD reported that more than 35% were diagnosed with or treated for a neurodevelopmental or mental health condition. Longer hospitalisation during the first year after CHD diagnosis was among the strongest clinical predictors, while parental mental health and socioeconomic factors were also associated with later diagnoses.
Integrated models are possible. At Children’s Hospital of Philadelphia, the FORWARD programme embeds psychology within multidisciplinary care for children with Fontan circulation. In a published evaluation of 158 patients, 92% received a psychology consultation, while elevated depression or anxiety symptoms, inattention and school difficulties were commonly identified.
The challenge is scaling such models beyond specialist centres.
Why it matters
- HTA bodies: Mental-health support is rarely evaluated as part of a cardiovascular technology, yet long-term CHD outcomes increasingly extend beyond mortality and surgical success. Quality of life, neurodevelopment and psychological outcomes may deserve greater weight when assessing comprehensive congenital care pathways.
- Payers: Screening without funded follow-up has limited value. Integrated models require psychology time, referral capacity, neuropsychology services and potentially longer multidisciplinary consultations, raising questions about how bundled or specialised CHD care should be reimbursed.
- Industry / innovation partners: Digital screening, patient-reported outcomes and longitudinal risk tools could help identify children needing additional support, but technology cannot substitute for the mental-health workforce and escalation pathways required when a screening result is positive.
For decades, progress in congenital heart disease could be measured in survival.
Better surgery, critical care and long-term cardiovascular management have transformed outcomes for many children born with complex heart defects. But living longer with CHD has brought other outcomes into view.
Mental health is one of them.
The American Heart Association’s scientific statement on psychological outcomes in congenital heart disease describes psychiatric disorders as the most common comorbidity in this population. Depression, anxiety, attention difficulties and other psychological or neurodevelopmental problems can emerge across the life course, while risk may be influenced by altered fetal circulation, hypoxia, perioperative neurological injury and repeated exposure to complex medical care.
For children, the burden can begin early.
A large Danish population study published in 2025 examined 16,473 children with CHD. More than 35% were diagnosed with or treated for a neurodevelopmental or mental health condition. The researchers found that prolonged hospitalisation in the first year following CHD diagnosis was an important clinical predictor, while family mental health and socioeconomic circumstances also shaped risk.
This is important for personalised care because the psychological consequences of CHD are not evenly distributed.
A child with a relatively uncomplicated defect and limited hospital exposure may have very different needs from a child who has undergone repeated procedures, prolonged intensive-care admissions and years of uncertainty around future treatment. Screening creates an opportunity to identify that difference before psychological distress becomes a crisis.
The question is how to make screening part of real cardiology practice.
Experts interviewed by The Cardiology Advisor argue that psychosocial surveillance should be routine. That can mean asking about school performance, behaviour, developmental milestones, mood and anxiety, alongside using validated screening tools where appropriate. But they also stress that every screening programme needs a response plan: who reviews the result, when intervention is triggered and where a child or family is referred.
An existing model shows what that can look like.
The FORWARD programme at Children’s Hospital of Philadelphia provides multidisciplinary care for children and adolescents with Fontan circulation and includes a dedicated psychologist within the clinical team. Psychology participates in team discussions and treatment planning rather than operating as a separate downstream referral service. Among 158 patients assessed between 2019 and 2022, 92% completed a psychology consultation. Elevated depression or anxiety symptoms were found in 23%, inattention in 37%, and school difficulties in 22%.
The programme also exposes the implementation problem. Dedicated psychologists need protected clinical time, institutional funding and referral capacity. The study itself notes that insurance coverage can create barriers and that specialist capacity limits ongoing follow-up for some patients.
That means simply adding a depression questionnaire to a paediatric cardiology appointment is not integrated care.
The more consequential shift is structural: recognising that the long-term outcome of congenital heart disease includes how a child learns, functions, forms relationships and copes with a lifelong medical condition.
Cardiology succeeded in helping many of these children survive.
The next challenge is building systems designed to help them live well.
