Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association

Abstract

Although resilience and high quality of life are demonstrated by many individuals with congenital heart disease, a range of significant psychological challenges exists across the life span for this growing patient population. Psychiatric disorders represent the most common comorbidity among people with congenital heart disease. Clinicians are becoming increasingly aware of the magnitude of this problem and its interplay with patients’ physical health, and many seek guidance and resources to improve emotional, behavioral‚ and social outcomes. This American Heart Association scientific statement summarizes the psychological outcomes of patients with congenital heart disease across the life span and reviews age-appropriate mental health interventions, including psychotherapy and pharmacotherapy. Data from studies on psychotherapeutic, educational‚ and pharmacological interventions for this population are scarce but promising. Models for the integration of mental health professionals within both pediatric and adult congenital heart disease care teams exist and have shown benefit. Despite strong advocacy by patients, families‚ and health care professionals, however, initiatives have been slow to move forward in the clinical setting. It is the goal of this scientific statement to serve as a catalyst to spur efforts for large-scale research studies examining psychological experiences, outcomes, and interventions tailored to this population and for integrating mental health professionals within congenital heart disease interdisciplinary teams to implement a care model that offers patients the best possible quality of life.

Exercise as therapy for neurodevelopmental and cognitive dysfunction in people with a Fontan circulation: A narrative review

“…It is likely that improved behavioural and psychosocial functioning associated with exercise participation and greater fitness, also mediate improvements in cognitive functioning. Children and adults with a Fontan circulation are at an increased risk of psychological distress and developing psychiatric disorders, that is associated with a myriad of factors linked to their cardiac anatomy ( 114 ). Physical restrictions and reduced exercise capacity likely contribute to these issues.…”

“…No studies have yet directly investigated the link between exercise, psychosocial functioning, and cognitive outcomes in people with a Fontan circulation. Importantly, interventions to promote psychological functioning, independent of cognitive dysfunction, are also greatly needed in this cohort ( 114 ).…”

Referral Order Placement Decreases Time to Transfer to Adult Congenital Heart Disease Care

“…In the United States (US), the recommended age for transfer to an accredited ACHD center is 18-21 years of age [2]. These years, however, are a vulnerable time for patients with CHD who may be experiencing parallel physiological, psychological, and social changes that can potentially impact a successful transfer to accredited ACHD centers [3][4][5][6]. Patients with CHD who experience fragmentation of care during the transition years have an increased risk for developing complications leading to hospitalization and procedural intervention [7][8][9][10][11].…”

Research priorities in children and adults with congenital heart disease: a James Lind Alliance Priority Setting Partnership

“…Uncertainty over further interventions and long-term outlook may contribute to increased levels of anxiety, depression and other mental health issues in CHD. 9 While a growing number are living with CHD into their 60s and beyond, developing acquired morbidities and senescence, 10 long-term survival remains reduced compared with the general population, especially in those with uncorrected, palliated, complex or cyanotic heart conditions, with heart failure the most common cause of premature death. 11 …”