Approximately 40,000 babies are born each year in the United States with a congenital heart defect -- the most common type of birth defect -- but there’s good news: babies born with heart defects are living longer and healthier lives.
It is estimated that about 1 million children and about 1.4 million adults in the United States are living with congenital heart disease. And while their lifespan has increased, living with this condition can take a toll on their mental health: about one-third of adult congenital heart disease patients have mood or anxiety disorders.
Psychologist Adrienne Kovacs, Ph.D., director of behavioral cardiovascular care in the OHSU Knight Cardiovascular Institute and associate professor (provisional) of medicine in the OHSU School of Medicine, shares how she provides support to adult patients living with the condition.
What is a congenital heart defect?
Most forms of heart disease are acquired during a person’s lifetime, for example, coronary artery disease or atherosclerosis. A congenital heart defect is a condition that is present at birth.These days, some of the more complex heart defects are often diagnosed even before birth. However, it’s not uncommon for someone to be diagnosed in adulthood with a defect, but they were indeed born with the defect.
Why are people who live with a congenital heart defect at higher risk for depression and anxiety?
We know that about one in three adults with congenital heart disease will be dealing with clinically significant depression or anxiety. We also know that people living with chronic conditions have an extra set of challenges. For example, they may be limited in social situations, have a general sense of feeling different, they face uncertainty and they are also coping with numerous doctor’s appointments and hospitalizations. There can also be significant events that take a toll, for example, preparing for a major heart surgery or a decline in health status.
What advice do you have for congenital heart defect patients who are struggling with depression or anxiety?
If they are struggling, they should tell a member of their health care team, whether it’s their cardiologist, nurse or physician’s assistant, because it’s important to know that they are not alone. Their care team can share information that has helped other patients in the past, and they may be able to refer them to a mental health professional if needed.
How do you specifically help patients cope?
I help people learn ways to do things differently and to think about things differently, with the goals of improved mood and reduced anxiety. For some, it’s teaching relaxation strategies, for others it’s learning how to think about things in a more helpful way, or communicating more effectively with health care providers and loved ones. We then identify specific strategies to address their concerns and the goal is to finish psychotherapy with a tool belt that includes a variety of coping strategies.
How are mental, physical and emotional health connected?
There is a strong relationship between the body and mind. It’s a two-way street: a patient may experience heart palpitations (physical) and it may cause anxiety (emotional). Similarly, stress may lead them to be more likely to notice heart palpitations as a reaction.
Patients with congenital heart defects often struggle with the transition from childhood to adulthood. How can we be more supportive?
There are two parts to the transition. The first is the gradual increase in responsibility of health care management as patients with congenital heart disease age. In childhood and early adolescence, parents often make appointments, help fill prescriptions and accompany them to appointments. As patients become young adults, we encourage them to take more responsibility for their health, have conversations with providers and know what to do if they need more urgent care. This can be a challenging transition for patients, parents and even health care providers.
The second is the transfer from pediatric to adult care. Pediatric hospitals are very different from adult care facilities, and patients have often been seeing the same cardiologist for 15 or 20 years of their life. It is always difficult to switch medical teams. So, patients around this age often have lapses in care. By providing emotional support, we can help make sure they are getting the regular care they need.
How do you help patients make transition from pediatric to adult care?
At OHSU, we have a congenital heart disease transition working group between Doernbecher Children’s Hospital and Knight Cardiovascular Institute that meets regularly to coordinate care and educate parents and patients so that the transition is smooth. We also have a website we refer young people to called www.iheartchange.org.
How does congenital heart disease affect quality of life? What unique challenges do they face?
When we talk specifically about quality of life, the research is not what you’d expect. In an international study of 4,000 patients with congenital heart disease, they reported quality of life as quite good. In the health care setting, it's often defined by “cardiovascular function.” Outside of the health care setting though, there many other factors that affect quality of life - family, friends, school, jobs, interests, hobbies, etc. So, when we think quality of life, we want to look at patients as individuals outside the clinic setting. I am constantly amazed at the resilience of adults who have been living with a congenital heart defect their entire lives. They’ve grown up with something and have to develop individual coping skills. My reward is learning what has helped them adapt and thrive in life.
How does living with a congenital heart defect impact personal relationships?
We often refer to this as the psychosocial, or psychological and social well-being. A patient’s condition not only affects them, it affects friends and family members, so we need to also be mindful of that. Conversely, it’s important for friends and family to not make assumptions about how their loved one is thinking or feeling. When a patient comes to friends and family with concerns, simply asking them if they are looking for a friendly ear or if they are looking for advice will help ensure that they are providing the support needed. Good listening skills go a long way, in any situation.
It’s rare to have a psychologist on staff as part of a cardiovascular care team. Why do we offer this service?
Knight Cardiovascular Institute is incredibly innovative and they have a genuine commitment to providing patient-centered care by attending to the whole person. When I first met with the leadership team, I was consistently impressed with how they were trying to figure out how they could do better. They know they have expertise in cardiovascular management and listening care, but some of the emotional support is out of their domain of knowledge and they were excited about adding this important component. The Knight Cardiovascular Institute cares about more than just your heart.