Show notes
CardioNerds Dr. Josh Saef, Dan Ambinder, join Dr. Jim Kimber and interview experts Dr. Adrienne Kovacs, and Dr. Lauren Lastinger and discuss behavioral health needs and psychosocial wellbeing in the congenital heart disease population. In this episode, our experts tackle issues surrounding mental and behavioral health including anxiety/depression, ADHD, neurodevelopmental disabilities, psychosocial challenges, stressors unique to patients with ACHD and their families, and how the healthcare system can better optimize mental health care for the CHD patient population. Audio editing by CardioNerds Academy Intern, Pace Wetstein.
The CardioNerds Adult Congenital Heart Disease (ACHD) series provides a comprehensive curriculum to dive deep into the labyrinthine world of congenital heart disease with the aim of empowering every CardioNerd to help improve the lives of people living with congenital heart disease. This series is multi-institutional collaborative project made possible by contributions of stellar fellow leads and expert faculty from several programs, led by series co-chairs, Dr. Josh Saef, Dr. Agnes Koczo, and Dr. Dan Clark.
The CardioNerds Adult Congenital Heart Disease Series is developed in collaboration with the Adult Congenital Heart Association, The CHiP Network, and Heart University. See more
Disclosures: None
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Pearls - Congenital Heart Disease and Psychosocial Wellbeing
Among patients with congenital heart disease, symptoms of anxiety are more common than symptoms of depression. “Heart-focused anxiety” relates to symptoms attributable to a heart condition including fear of appointments, surgery, or health-uncertainty. It is important to differentiate this from generalized anxiety.Predictors of depression and anxiety include patient-reported physical health status. Defect severity (mild, moderate, great complexity) and physician-diagnosed NYHA class were NOT associated with rates of depression/anxiety [2].Despite CHD, patient self-reported Quality of Life (QoL) is relatively high. Predictors of decreased QoL include older age, lack of employment, never having married, and worse self-reported NYHA functional classImportant treatment strategies include: education for patients and caregivers, early identification and referral to mental health providers, incorporation of providers into CHD teams, and encouraging physical activity and peer-interaction.
Show notes - Congenital Heart Disease and Psychosocial Wellbeing
Notes (developed by Dr. Jim Kimber)
Mental Health Terminology:
Adults with CHD face the same mental health challenges as people who don’t have a heart condition. Symptoms of depression and anxiety are the most common: Approximately 1/4 - 1/3 of CHD patients will struggle with clinically significant depression or anxiety at any one point. Up to ½ will meet lifetime diagnostic criteria for these conditions
Mood and anxiety disorders differ in that they have separate diagnostic criteria. Importantly, research often uses self-reported symptoms, rather than patients who have formally met diagnostic criteria.
Historically, the focus has been on depression. However, elevated symptoms of anxiety are much more common than elevated symptoms of depression.
It is important to make the distinction between “Generalized Anxiety,” and “Heart-Focused Anxiety.”Heart-Focused Anxiety: symptoms of anxiety directly related to having a heart condition, such as fear of appointments / worry about a decline in health status, getting an ICD, preparing for surgery, transplants, or having a shortened life expectancy, etc. This may also include a significant component of health uncertainty – the idea that patients are aware of need for a likely intervention but without ability to prognosticate timelines (e.g. need for valve replacement). This component differentiates CHD patients from those with acquired heart disease who have not been surrounded by such uncertainty for significant components of their life.Generalized Anxiety: excessive worry about a lot of factors beyond their control and accompanied by other symptoms like: muscle tension, sleep disturbance.
Manifestations of mood and behavioral health problems include: impaired peer relationships, impaired romantic relationships, poor school or work performance, difficulty getting or keeping a job. Persons may struggle with inconsistent medical follow-up, inconsistent compliance, and substance abuse.
Predictors & Prevalence of Depression / Anxiety:
Defect Severity (mild, moderate, great complexity) was not associated with depression or anxiety. Similarly, physician diagnosed NYHA Class was not associated with depression/anxiety [2]. Known predictors: patient-reported physical health status impacts symptoms of depression/anxiety [2].There is also a link between social wellbeing and psychological well-being. Other studies have highlighted that perceived health status is an important predictor.
Risk Stratification
All patients with congenital heart disease are at risk for mental health disorders and need to be screened. Those at heightened risk include patients with genetic syndromes (in particular, those with 22q11 deletion, associated with more severe psychiatric disorders), prematurity, longer hospital stays, and those with lower family socioeconomic status.
Patients who have undergone cardiopulmonary bypass have higher likelihood of neurologic insults (CVA), but also cognitive dysfunction following surgery. In research, Apolipoprotein E has been predictive of neurodevelopmental dysfunction following cardiac surgery.
Other factors, including the number of surgeries, and how often they were separated from peers growing up might also impact mental health well-being in adults.
Quality of Life (QoL) and Assessment
Approach-IS Study
International Study looking at patient-reported outcomes in adults with CHD.Over 4,000 patients from 15 countries were enrolled.Self-Reported Questionnaires administered to gain information on perceived health
status, psychological functioning, health behaviors, quality of life (Scale 0-100) [9]
Patients have lived with CHD their entire life, and report relatively high QoLOlder age, lack of employment, never having married, and worse NYHA functional class (self- reported) are associated with lower QoL
Alternative Assessment for Nonverbal Patients:
Concerns may come from caregivers or parentsMay demonstrate behavioral changes: outbursts, changes in feeding/eating habits or weight loss/gain, changes in sleeping patterns, fatigue, low mood, anhedoniaScreening should begin early in childhood (early assessment and diagnosis allows for enrollment in beneficial social / developmental programs)Cardiac Neurodevelopmental Outcome Collaborative (CNOC): recommend screenings for various ages and provide suggested screening algorithms.
Transition to Adult Teams: process that occurs during early adolescence
Goals: stay in uninterrupted health care throughout their lives, avoid lapses in care, have an established process, allow patients to develop knowledge and skills to assume maximal responsibility for their healthcare management, and adapt information delivery as necessary
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