HAE patients have higher PTSD risk, new research suggests
Findings also point to a reciprocal relationship between the two conditions
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People with hereditary angioedema (HAE) have a higher risk of developing post-traumatic stress disorder (PTSD), a mental health condition triggered by exposure to psychological stress, according to a new study.
Researchers also found that a PTSD diagnosis correlated with high rates of depression and reduced mental health-related quality of life, and they suggested a reciprocal association between PTSD and HAE.
“Further research to explore and confirm the relationship between HAE and PTSD is expected to provide meaningful insights into mechanisms of disease and advance the foundation for novel treatment approaches,” the researchers wrote.
The study, “Hereditary angioedema and post traumatic stress disorder: a reciprocal relationship?” was published in Orphanet Journal of Rare Diseases.
Nearly half tested positive for PTSD using lower cutoff score
HAE is a rare genetic condition marked by sudden, unpredictable episodes of swelling in the skin, face, abdomen, and airways. Attacks can be painful, disfiguring, and in some cases life-threatening, especially if the airway is affected.
Such episodes can lead to extreme stress and, potentially, PTSD, a mental health condition that can develop after frightening, dangerous, or life-threatening events.
To learn more, researchers from the University of California, San Diego, and the Veterans Affairs San Diego Healthcare System set out to find out how often people with HAE experience PTSD.
The team recruited 77 adults (82% women) with HAE through the U.S. HAE Association. Twenty-nine volunteered after hearing about the study, and 48 were randomly selected from the association’s membership list. Participants filled out online questionnaires covering their HAE history, quality of life, childhood trauma, depression, traumatic life events, and PTSD symptoms.
Because the researchers did not perform the gold-standard clinical interview for diagnosing PTSD, called the Clinician Administered PTSD Scale, they used the term “presumptive PTSD.” It described people who screened positive on a validated questionnaire called the PTSD Checklist-Civilian Version (PCL-C). Here, scores ranged from 17 to 85, with 30 and 50 considered a cutoff score for a PTSD diagnosis.
Using a PCL-C cutoff score of 30, about half (48.6%) tested positive for PTSD, while at the higher cutoff of 50, about one in five (18.1%) tested positive. Using a second scoring method based on specific symptom clusters, the researchers found a rate of 20.8%.
By comparing their results to other studies that used both the questionnaire and clinical interviews, the authors estimated that the true prevalence of PTSD in this group is likely between 20% and 25%. For comparison, PTSD affects an estimated 6.8% of American adults at some point in their lives, and about 3.5% in any given year.
There was no meaningful difference in PTSD rates between the self-referred group and the randomly selected group, suggesting the rate was not due to people with more severe symptoms volunteering for the study.
Many participants worry about a child developing HAE
When participants were asked to name their most distressing HAE-related experiences, the most frequently cited were worry about a child developing HAE, a near-death experience, or the death of a relative from HAE. Others included difficulty functioning during attacks, fear of dying during an attack, and not having access to effective treatment.
In fact, a lack of access to effective treatment showed the strongest link to a positive PTSD screen. Many participants also identified non-HAE-related traumas, most commonly the death of a close relative, other serious illness, and family conflict.
In other assessments, higher PTSD screening scores were strongly associated with higher (worse) depression scores on the Beck Depression Inventory-II, with childhood trauma history, and with measures of psychological distress at the time of a traumatic event. Quality of life, measured using the SF-36 survey, was significantly lower in the mental health domains for those who screened positive for PTSD at every cutoff tested.
Individuals with HAE appear to be at disproportionate risk for developing PTSD, depression and impairments in emotional/mental domains for quality of life.
Two measures of HAE severity were also linked to PTSD: an earlier age of first attack and the need for emergency department treatment. Participants who needed emergency care had higher average PTSD screening scores than those who did not (33.29 vs. 23.12 points).
A statistical model combining multiple factors found that delay to diagnosis, the number of emergency department visits, and peritraumatic distress (a measure of how distressing the event felt at the time) were the strongest contributors to PTSD scores.
The authors also proposed that “PTSD and HAE may reciprocally influence one another.” Specifically, they noted that there is evidence that bradykinin, the molecule responsible for HAE swelling attacks, is constantly produced at low levels in HAE patients and spikes during attacks. They suggest that inflammatory signals associated with stress and PTSD could potentially increase bradykinin activity. Additionally, the chronic stress of living with HAE could affect the nervous system in ways that contribute to PTSD.
“Individuals with HAE appear to be at disproportionate risk for developing PTSD, depression and impairments in emotional/mental domains for quality of life,” the researchers concluded. “The interrelationship between PTSD and HAE may represent reciprocal risk factors enhancing disease severity.”
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