The burden of psychological trauma and post-traumatic stress disorder among adults with congenital heart disease: PTSD in ACHD.

BACKGROUND: Psychological trauma, symptoms of post-traumatic stress disorder (PTSD), and mental health conditions are common in adult congenital heart disease (ACHD). There is a gap in the literature examining PTSD in ACHD using the current DSM-5 criteria, while assessing patient characteristics and experiences with trauma-focused treatment.

METHODS: Surveys were offered to outpatients over a six-month enrollment period to be completed via QR code on their personal smart phone. Patient-reported items include a detailed medical and psychosocial history, the Oslo Social Support Scale (OSSS-3), Adverse Childhood Experiences (ACEs) survey, and the PTSD Checklist for DSM-5 (PCL-5).

RESULTS: Of 158 patients (77% moderate or complex heart disease) who provided complete data, a provisional diagnosis of PTSD was found in 48 patients (30%), using a PCL-5 cutoff score of ≥ 31. A positive PTSD screen was associated with younger age, non-white race, presence of heart failure, lower New York Heart Association Functional Class, lower linear Quality of Life score, lower OSSS-3 score, an insecure caregiver relationship, period of unemployment, emergency department visits, medication nonadherence, and coexisting mental health disorders. Complexity of heart disease and number of surgical and/or catheter-based interventions was not associated with PTSD, although having undergone no cardiac surgeries until adulthood (≥ 18 years old) was associated with a lower prevalence of PTSD. Those who screened positive for PTSD were more likely to report multiple traumatic events, including noncardiac traumatic events. Only 14/48 patients (29%) reported a known diagnosis of PTSD, although 44 patients (92%) reported having ever seen a mental health provider. Eighteen patients (38%) reported currently having a mental health provider. Thirty patients (62%) had heard of at least one evidence-based trauma-informed therapy, and 14 (29%) had tried at least one.

CONCLUSIONS: Using the DSM-5 criteria, we observed a high prevalence of potential PTSD in ACHD associated with several novel cardiac and psychosocial patient factors. Future longitudinal studies will be necessary to establish causality. Few individuals with ACHD have been formally diagnosed with PTSD or have experience with evidence-based trauma-informed therapies.