Post-traumatic stress disorder (PTSD) is associated with adverse outcomes and increased mortality in cardiac patients. No studies have examined PTSD in the adult congenital heart disease (ACHD) population. The objectives of this study were to assess the prevalence of self-reported symptoms of PTSD in patients with ACHD and explore potential associated factors. Patients were enrolled from an outpatient ACHD clinic and completed several validated measures including the Impact of Event Scale-Revised, PTSD Checklist-Civilian Version, and the Hospital Anxiety and Depression Scale. Clinical data were abstracted through medical data review. A total of 134 participants (mean age 34.6 ± 10.6; 46% men) were enrolled. Of the 127 participants who completed the Impact of Event Scale-Revised, 14 (11%) met criteria for elevated PTSD symptoms specifically related to their congenital heart disease or treatment. Of the 134 patients who completed PTSD Checklist-Civilian Version, 27 (21%) met criteria for global PTSD symptoms. In univariate analyses, patients with congenital heart disease–specific PTSD had their most recent cardiac surgery at an earlier year (p = 0.008), were less likely to have attended college (p = 0.04), had higher rates of stroke or transient ischemic attack (p = 0.03), and reported greater depressive symptoms on the Hospital Anxiety and Depression Scale (7 vs 2, p <0.001). In multivariable analysis, the 2 factors most strongly associated with PTSD were depressive symptoms (p <0.001) and year of most recent cardiac surgery (p <0.03). In conclusion, PTSD is present in 11% to 21% of subjects seen at a tertiary referral center for ACHD. The high prevalence of PTSD in this complex group of patients has important implications for the medical and psychosocial management of this growing population.
More than 85% of children born with congenital heart defects now survive into adulthood. Although the life expectancy of subjects with moderate or severe congenital heart disease (CHD) has improved, their care is complex, often requiring multiple surgeries and interventional procedures. These patients remain at risk for both noncardiac and cardiac sequelae of their CHD and face unique life stressors that may place them at elevated risk for psychological distress. Approximately 1/3 of North American patients with adult congenital heart disease (ACHD) are believed to have anxiety and/or depression. The incidence of post-traumatic stress disorder (PTSD) in this population, however, is currently not well described. The objectives of this cross-sectional, single-center study were to (1) determine the prevalence of PTSD symptoms in patients with ACHD and (2) explore potential clinical, demographic, and quality-of-life (QOL) factors associated with PTSD.
Methods
Consecutive patients were recruited from the outpatient clinic of a tertiary ACHD center from August to December 2013. Study inclusion criteria were age ≥18 years, documented CHD, and the cognitive and language abilities to complete the informed consent process and questionnaires in English. Written informed consent was obtained from all participants, and the study was approved by the institutional ethics review board.
Participants completed a background survey and multiple psychosocial measures. The background survey included questions about marital status, employment, education, and history of mental health treatment. Patients were asked whether they had experienced a medically traumatic event. For the purpose of study analyses, these traumatic events were later coded as being related to: (1) cardiac surgery, (2) other cardiovascular event, or (3) a noncardiac medical event.
Two psychometrically validated measures of PTSD were administered in this study, namely the Impact of Event Scale-Revised (IES-R) and the PTSD Checklist-Civilian Version (PCL-C). The IES-R is a self-report tool assessing PTSD symptoms based on psychiatric diagnostic criteria of the Diagnostic and Statistical Manual, Fourth Edition . Participants respond to items with respect to a specific stressor, which in this study was defined as their congenital heart condition or treatment. Twenty-two items are rated on a scale ranging from 0 (not at all) to 4 (extremely). Total possible scores range from 0 to 88, and a cut-off score ≥33 suggests a likely PTSD diagnosis. In contrast to the IES-R, the PCL-C is a 17-item questionnaire that provides an assessment of PTSD based on Diagnostic and Statistical Manual, Fourth Edition , criteria with respect to any traumatic event. 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 ≥44 indicates a likely PTSD diagnosis. For the purposes of this study, we considered IES-R as a measure of CHD-specific PTSD symptoms and PCL-C as a measure of global PTSD symptoms.
Symptoms of depression were assessed using the depression subscale of the Hospital Anxiety and Depression Scale (HADS-D). Respondents rate 7 symptoms on a 4-point Likert scale, with higher scores representing greater symptom severity. Two measures of QOL were also administered. The Satisfaction With Life Scale (SWLS) is a 5-item tool that measures global life satisfaction, with higher scores indicating higher satisfaction. Participants also completed the Linear Analogue Scale (LAS), which consists of a vertical, graded line ranging from 0 (“worst imaginable quality of life”) to 100 (“best imaginable quality of life”). Clinical data and demographic data were collected through retrospective chart review. CHD was categorized as simple, moderate, or great complexity. Study data were collected and managed using Research Electronic Data Capture (REDCap), a secure Web-based data capture application hosted at the Hospital of the University of Pennsylvania.
Demographic and clinical characteristics were investigated as means with SDs, medians with interquartile ranges, or percentages as appropriate. The IES-R and PCL-C scores were dichotomized using respective cut-off values of ≥33 and ≥44. The Mann-Whitney-Wilcoxon and Fisher’s exact tests were used to investigate differences in continuous variables and categorical variables, respectively. Univariate logistic regression was performed to identify factors associated with PTSD. Because of the small number of participants with PTSD as defined by the IES-R, variables with p value <0.05 were included in the multivariable logistical regression model for IES-R. Variables with p value <0.10 in univariate analyses were included in a multivariable model for PTSD as defined by the PCL-C. Participants with CHD of simple and moderate complexity were combined for analyses because of the low number of participants with simple defects. Missing values were excluded from analyses. Statistical analysis was performed using SPSS (IBM SPSS Statistics for Windows, Version 22.0. Armonk, New York: IBM Corp).
Results
A total of 222 patients were invited to participate in the study, of whom 138 (62%) consented and were enrolled. Four patients were excluded from final analysis, generating a final sample size of 134. Patients were excluded for the following reasons: insufficient cognitive and language abilities to complete the survey (n = 2) and incomplete or uninterpretable survey data (n = 2).
Table 1 summarizes the demographic and clinical characteristics of the sample. The most common defects were tetralogy of Fallot (n = 27; 20%), complete transposition of the great arteries (n = 13; 10%), and bicuspid aortic valve disease and/or congenital aortic stenosis (n = 12; 9%). A total of 119 patients (89%) had a history of cardiac intervention as defined by cardiac surgery, interventional catheterization, or electrophysiology procedure. At the time of the study visit, 16 patients (12%) reported psychotherapy and 22 (16%) reported pharmacotherapy.
| Variable | Total Sample (n = 134) | IES-R (n = 127) | PCL-C (n = 131) | ||||
|---|---|---|---|---|---|---|---|
| No PTSD (n = 113 ) | PTSD (n = 14 ) | P | No PTSD (n = 104) | PTSD (n = 27) | P | ||
| Age (years) | 32.3 (19.2–61.0) | 31.9 (19.8–61.0) | 36.5 (22.6–60.7) | 0.07 | 31.8 (19.2–61.0) | 35.1 (19.8–60.7) | 0.16 |
| Male | 61 (46%) | 49 (43%) | 10 (71%) | 0.09 | 49 (47%) | 11 (41%) | 0.55 |
| White | 109 (81%) | 94 (89%) | 12 (86%) | 1.00 | 82 (79%) | 24 (89%) | 0.29 |
| Partnered | 67 (50%) | 56 (50%) | 7 (50%) | 1.00 | 51 (49%) | 13 (48%) | 0.93 |
| College education or above | 81 (60%) | 74 (66%) | 5 (36%) | 0.04 | 65 (63%) | 14 (52%) | 0.31 |
| Employed or student | 105 (78%) | 91 (81%) | 9 (64%) | 0.16 | 83 (81%) | 18 (67%) | 0.12 |
| CHD complexity | |||||||
| Simple to moderate | 95 (71%) | 83 (74%) | 7 (50%) | Referent | 77 (74%) | 15 (56%) | Referent |
| Great | 39 (29%) | 30 (27%) | 7 (50%) | 0.11 | 27 (26%) | 12 (44%) | 0.06 |
| Cardiac intervention | 119 (89%) | 101 (89%) | 12 (86%) | 0.65 | 91 (88%) | 25 (93%) | 0.36 |
| Total cardiac interventions | 2 (0–12) | 2 (0–12) | 4 (0–9) | 0.07 | 2 (0–11) | 4 (0–12) | 0.03 |
| Year of most recent cardiac surgery | 1995 (1967–2013) | 1996 (1967–2013) | 1987 (1967–2006) | 0.008 | 1996 (1968–2013) | 1991 (1967–2012) | 0.03 |
| Cardiac surgery | |||||||
| < 1990 | 39 (35%) | 29 (78%) | 8 (21%) | 26 (68%) | 12 (31%) | ||
| ≥ 1990 | 72 (65%) | 65 (96%) | 3 (4%) | 0.01 | 59 (84%) | 11 (16%) | 0.06 |
| Pacemaker/ICD | 30 (22%) | 24 (21%) | 4 (29%) | 0.51 | 22 (21%) | 8 (30%) | 0.35 |
| Heart failure | 27 (20%) | 21 (19%) | 4 (29%) | 0.47 | 19 (18%) | 8 (30%) | 0.19 |
| Arrhythmia | 60 (45%) | 47 (42%) | 8 (57%) | 0.39 | 44 (42%) | 14 (52%) | 0.37 |
| Stroke/TIA | 13 (10%) | 8 (7%) | 4 (29%) | 0.03 | 7 (7%) | 6 (22%) | 0.03 |
| Genetic syndrome | 10 (8%) | 11 (10%) | 0 (0) | 0.61 | 10 (10%) | 1 (4%) | 0.32 |
| HADS-D score | 3 (0–13) | 2 (0–13) | 7 (3–13) | <0.001 | 2 (0–13) | 7 (1–13) | <0.001 |
| Patient reported medically traumatic event | 77 (58%) | 61 (55%) | 10 (71%) | 0.27 | 54 (52%) | 19 (70%) | 0.12 |
Of the total sample, 76 (57%) recalled a total of 106 medically traumatic events. Of these 106 events, 36 (34%) were related to cardiac surgery, 43 (41%) were related to other cardiovascular events (including arrhythmia, heart failure, stroke, and cardiac arrest), and 27 (25%) were noncardiac medical events (e.g., motor vehicle accident, cancer, noncardiac surgery). Of the 112 patients who had previously undergone cardiac surgery, 68 (61%) reported experiencing a medically traumatic event and 36 (32%) specified cardiac surgery as the traumatic event.
A total of 127 patients completed the IES-R, which assessed PTSD symptoms specifically related to CHD. Of these patients, 14 (11%) met criteria for a likely PTSD diagnosis as defined by a total score ≥33. The mean IES-R score in the group that met criteria for PTSD was 54.5 ± 10.3. Results of the univariate analyses are presented in Table 1 . In multivariable analysis, the factors associated with CHD-specific PTSD were higher HADS-D score (odds ratio [OR] 1.64; 95% confidence interval [CI] 1.17 to 2.29; p = 0.004), year of most recent cardiac surgery (OR 0.88; 95% CI 0.80 to 0.97; p = 0.009), and history of stroke or transient ischemic attack (OR 12.72; 95% CI 1.00 to 161.42; p = 0.05; Table 2 ). There were no significant differences in demographic variables, disease complexity, history of cardiac intervention, or recalled medically traumatic event between patients who did and did not meet criteria for likely PTSD.
| Variable | OR | 95% CI | P |
|---|---|---|---|
| Year of most recent cardiac surgery ∗ | 0.88 | 0.80–0.97 | 0.009 |
| College education or above | 1.00 | 0.18–5.39 | 1.00 |
| Stroke/transient ischemic attack | 12.72 | 1.00–161.42 | 0.05 |
| HADS-D | 1.64 | 1.17–2.29 | 0.004 |
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