Stressed Out: Adults with Congenital Heart Disease

Thanks to surgical and treatment advances over the last several decades, survival rates for babies born with congenital heart disease (CHD) are increasing. Indeed, 85% of babies born with CHD are expected to survive to adulthood. As a result, there are currently an estimated 1.5 million adult patients with congenital heart disease and adult patients now outnumber pediatric patient 2 to 11.

While still not common, adults with congenital heart disease (ACHD) are showing up more frequently across all healthcare settings. In addition to the unique and advanced medical care demands, these patients often have complex psychosocial needs as well. Prior research has noted that 1 in 3 adult CHD patients lives with depression or anxiety2. Identifying, understanding and addressing psychological stressors in this population is necessary to provide comprehensive nursing care.

More than Anxiety
We noted that at our center, ACHD patients often presented with exaggerated emotional responses to a variety of medical interventions. We therefore suspected that there was more to our patients than anxiety and depression.

Post-traumatic stress disorder (PTSD) is defined as a complex psychologic response which is preceded by exposure to a catastrophic or traumatic event. Patients who suffer from PTSD are plagued by intrusive thoughts, nightmares, and flashbacks of those past events and they often adapt behaviors designed to avoid the prior trauma. In addition, PTSD is commonly accompanied by comorbid psychiatric conditions including anxiety, depression, substance abuse, and somatization which can result in social, occupational, and interpersonal dysfunction. The DSM-5 describes PTSD events as involving actual or perceived death or injury, or a threat to the physical integrity of him/herself or others3.

We postulated that cumulative surgeries and/or cardiac procedures may be traumatic enough to result in PTSD and decided to study the incidence of PTSD in the adult congenital cardiac patient population.nurse with male heart patient

Assessing for PTSD
We approached 222 consecutive patients who arrived for visits to our tertiary care outpatient ACHD clinic, and a total of 127 patient were enrolled. To assess for PTSD, we utilized the PTSD Checklist-Civilian Version (PCL-C). This is a 17-item questionnaire adapted from a version used by the Veteran’s Administration for soldiers. (Questionnaire can be viewed at

This tool provides an assessment of PTSD based on the DSM-4 criteria with respect to any traumatic event. (Note: the DSM-5 is now available but was not the APA diagnostic manual at the time of our study and will be discussed further later in this article). Respondents rate each item on a scale ranging from 1 (not at all) to 5 (extremely) to indicate the degree to which they were bothered by that symptom during the past month. The total symptom severity score ranges from 17 to 85, and a cut-off score greater than 44 indicates a likely PTSD diagnosis.

Based on this screening tool, we found the prevalence of PTSD in our patient cohort to be 21%. This is several times higher than the general population (1-6%) but similar to results found in pediatric heart disease (12 to 29%) and to adults with “typical” acquired heart disease (12 to 38%) 4, 5. Of those that screened positive in our study, half reported a medically traumatic event as the source of their symptoms.

Individuals suffering from PTSD experience marked cognitive, affective, and behavioral responses to stimuli that may remind them of the trauma they experienced. In acquired cardiology patients, PTSD is associated with adverse outcomes and increased mortality 6.

Implications for Nursing Care
Nurses are often closely involved with patients during times of stress, and may be the first to observe symptoms suggestive of PTSD. When caring for adult patients with congenital heart disease, it is important to be aware and sensitive to the increased rates of anxiety, depression, and PTSD in this patient population. Understanding that patients may present with exaggerated reactions to health care interventions due to past medical trauma can assist the nurse to better support the patient.

SEE ALSO: How to Handle Difficult Coworkers

If there is a concern for PTSD, open ended questions regarding the event may be helpful in giving a patient time to voice their fears in a safe environment. This is a sensitive topic, and patients may minimize their symptoms or even feel guilt or embarrassment regarding their emotions.

Recognizing patients who present with excessive anxiety or fear can be a signal to administer a simple PTSD screening questionnaire, which if resources allow, nurses can perform independently. As mentioned earlier, the DSM V was published since we undertook our research and the PCL-C has been updated to the PCL-5 which is a 20-item self-report measure that functions similarly to the screening used in our study. The PCL-5 takes about 5-10 minutes to administer and can be found at

Any patient who screens positive for PTSD should be referred for a mental health evaluation. Treatment generally consists of a combination of therapy (often cognitive behavioral) and pharmacologic interventions (selective serotonin reuptake inhibitor or serotonin-norepinephrine reuptake inhibitor)7. Recognition of the elevated incidence of PTSD in the adult congenital cardiac patient population and performing screening can assist with identifying those at risk. Timely evaluation and treatment for PTSD can make a dramatic difference with overall patient functioning and quality of life.


1. Khairy P, Ionescu-Ittu R, Mackie AS, Abrahamowicz M, Pilote L, Marelli AJ. Changing mortality in congenital heart disease. Journal of the American College of Cardiology 2010; 56:1149-1157.

2. Kovacs AH, Saidi AS, Kuhl EA, Sears SF, Silversides C, Harrison JL, Ong L, Colman J, Oechslin E, Nolan RP. Depression and anxiety in adult congenital heart disease: predictors and prevalence. International Journal of Cardiology; 2009; 137:158-164.

3. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. (5 ed.). Washington, DC.: American Psychiatric Publishing, Incorporated.

4. Connolly D, McClowry S, Hayman L, Mahony L, Artman M. Posttraumatic stress disorder in children after cardiac surgery. Journal of Pediatrics 2004; 144:480-484As.

5. Ladwig KH, Baumert J, Marten-Mittag B, Kolb C, Zrenner B, Schmitt C. Posttraumatic stress symptoms and predicted mortality in patients with implantable cardioverter-defibrillators: Results from the prospective living with an implanted cardioverter-defibrillator study. Archives of General Psychiatry 2008; 65:1324-1330.

6. Edmondson D, Richardson S, Falzon L, Davidson KW, Mills MA, Neria Y. Posttraumatic stress disorder prevalence and risk of recurrence in acute coronary syndrome patients: A metaanalytic review. PLoS One 2012; 7:e38915.

7. Hetrick SE, Purcell R, Garner B, Parslow R. Combined pharmacotherapy and psychological therapies for post traumatic stress disorder (PTSD). Cochrane Database of Systematic Reviews 2010; CD007316.

David Drajpuch and Lynda Tobin are both affiliated with the Philadelphia Adult Congenital Heart Center, a joint program of the Children’s Hospital of Philadelphia and Penn Medicine.

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