Researchers are exploring how early-life stressors—such as multiple surgeries, family strain, and social challenges—might lead to post-traumatic stress disorder (PTSD) in adults with congenital heart disease (ACHD). By partnering with the Congenital Heart Initiative, one of the largest survey registries in ACHD, the study team will use specialized surveys and clinician-led interviews (the “gold standard” for diagnosing PTSD). Researchers will also assess how people with ACHD cope, adapt, and ultimately overcome these traumatic experiences, a phenomenon known as resilience.

Why This Matters:

• Many adults with ACHD faced significant medical and social challenges growing up.

• Understanding which patient experiences most strongly predict PTSD could help researchers and healthcare providers create better prevention and support strategies.

What to Expect:

• Participants will complete confidential surveys about their health history and emotional well-being.

• Some will be invited to take part in a follow-up interview conducted by trained facilitators to precisely assess for PTSD symptoms.

Goal:

• Identify how common PTSD is in ACHD

• Determine which patient factors increase the likelihood of developing PTSD

• Collect information on resilience in ACHD

• Ultimately improve mental health care and support for people living with ACHD

If you have ACHD and are interested in contributing to this research, your experiences and insights could help shape future support services for the ACHD community.

Contact: david.j.harrison@hitchcock.org