Abstract
Background: Studies show that the prevalence of illness-induced Posttraumatic Stress Disorder (PTSD) ranges from 12-25%, but little is known about the prevalence of PTSD or Posttraumatic Stress Symptoms (PTSS) among adults with hemophilia.
We hypothesized that persons with hemophilia (PWH) would be particularly at risk for PTSD and PTSS given their bleeding diathesis, bleeding disorder treatment and prophylaxis requirements, and history of viral contamination of their treatments. After experiencing a traumatic event, symptoms of PTSD include intrusive memories, avoidance of reminders of the traumatic event, negative alterations in cognitions and mood, and marked alterations in arousal and reactivity.
Aims:
Determine the prevalence of PTSD and PTSS among PWH.
Characterize the traumatic experiences of PWHs.
Methods: Using REDCap, a self-administered survey tool was offered to all adult PWH aged 20+ at the time of their annual comprehensive visit to their Hemophilia Treatment Center (HTC). Three large academic HTCs (Boston Hemophilia Center, MA; Mount Sinai Hemophilia Center, NY; M Health Fairview Center for Bleeding and Clotting Disorders, MN) participated in the study.
The tool for this study had two components: (i) Participant Characteristics was used to collect demographic information and specifics about participants’ hemophilia and comorbidities. Participants were also given the opportunity to provide a description of any hemophilia-related traumatic experience.
The second component of the tool was the (ii) PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders (DSM) 5 (PCL-5): The PCL-5 is a validated, 20-item, self-report questionnaire that assesses the four DSM-5 symptom clusters of PTSD and their severity. In this study, it was used to screen for PTSS and/or provide a provisional diagnosis of PTSD based on their identified hemophilia-related trauma.
Results: 178 participants were included in the analysis. Total scores on the PCL-5 ranged from 0-66 with a median of 8. 11.8% of participants (n=21) met criteria for a provisional PTSD diagnosis based on either PCL-5 score ≥ 31 or if the participant endorsed each PTSD symptom cluster. This included 6 participants (31.6%) with a self-reported established PTSD diagnosis.
101 participants (56.7%) identified a traumatic event related to living with hemophilia. The following themes of trauma emerged from their subjective trauma descriptions: non-infectious medical events, psychosocial, pain, hepatitis, and HIV/AIDS. 63 participants (35.4%) endorsed at least one Posttraumatic Stress Symptom (PTSS) by reporting a traumatic event and meeting clinical diagnostic criteria for at least one PTSD symptom cluster. Intrusion symptoms were experienced most frequently by participants (32%).
A higher burden of PTSD symptomatology was significantly associated with lower education levels (p = 0.003), being unemployed (p = 0.003), having a history of previous hospitalization (p<0.001) and having two or more previously identified mental health disorders (p<0.001). Age (p = 0.18), sex (p = 0.14), comorbidities (p=0.16) and severity of hemophilia (p = 0.67) were not significantly associated with PTSD symptomatology or PTSS.
Conclusion: PTSD and PTSS are commonly experienced by PWH regardless of disease severity and appear to exist at a higher rate than among the general population. These findings warrant the need for routine trauma screening, trauma informed care, and further investigation into trauma prevention.
This research was supported by the 2021 National Hemophilia Foundation's Social Work Excellence Fellowship Award.
Disclosures
Neuberg:Madrigal Pharmaceuticals: Current equity holder in private company. Parnes:Vertex: Current Employment; Shire: Membership on an entity's Board of Directors or advisory committees, Research Funding; Takeda: Membership on an entity's Board of Directors or advisory committees, Research Funding; Genentech: Membership on an entity's Board of Directors or advisory committees, Research Funding; Hoffman LaRoche: Research Funding; Sigilon: Membership on an entity's Board of Directors or advisory committees; UniQure: Membership on an entity's Board of Directors or advisory committees; Aspa: Consultancy; I-mAb: Consultancy; Sunovion: Consultancy.
Author notes
Asterisk with author names denotes non-ASH members.
