More than a 1/4 of aHUS patients have PTSD symptoms: Study

Psychiatric disorder is marked by constant distress related to traumatic event

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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About half of the atypical hemolytic uremic syndrome (aHUS) patients had clinically relevant anxiety and more than a quarter met the criteria for post-traumatic stress disorder (PTSD), according to a recent study.

“Our cross-sectional survey done a median of [six] years after acute … aHUS demonstrated a substantial burden of mental health symptoms and quality of life impairments assessed using well validated instruments,” the researchers wrote in “Post-traumatic stress disorder and quality of life alterations in survivors of immune-mediated thrombotic thrombocytopenic purpura and atypical hemolytic and uremic syndrome,” which was published in the Journal of Critical Care.

“In clinical practice, routine evaluations for mental health symptoms including those suggesting PTSD seem warranted in the hope that very early referral and treatment might improve patient outcomes,” the researchers wrote.

The work was funded by Alexion Pharmaceuticals, now part of AstraZeneca, which markets Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz), two medications approved for aHUS.

aHUS is a form of thrombotic microangiopathy, a category of disorders wherein blood clots form, damaging small blood vessels in the body.

Living with these diseases can take a toll on a person’s mental health, but not much formal research into their effects has been done, leading researchers to interview 51 people with aHUS and 52 with immune-mediated thrombotic thrombocytopenic purpura (iTTP), another form of thrombotic microangiopathy. About three-quarters of the patients were female (median age, 39).

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Lower quality of life with PTSD

All had been managed at intensive care centers in France. The interviews happened a mean of 72 months (around six years) after their initial hospitalization.

“To our knowledge, we report the first comparison of mental health symptoms and quality of life between iTTP and aHUS survivors,” the researchers wrote.

Based on standardized mental health assessments, half (50%) of the patients met the criteria for clinically relevant anxiety, and 14% had clinically relevant depression.

More than a quarter (27%) met criteria for PTSD, a psychiatric disorder marked by continual intense distress related to a traumatic event, which persists even after that event has long past.

“Post-traumatic stress disorder (PTSD) is a psychiatric disorder that may occur in people who have experienced or witnessed a traumatic event,” the researchers wrote. “Symptoms of PTSD include intrusion (intrusive thoughts such as repeated, involuntary memories; distressing dreams or flashbacks of the traumatic event); avoidance (avoiding people, places, activities, objects and situations that may trigger distressing memories); and hyperarousal (being irritable and having angry outbursts, behaving recklessly or in a self-destructive way, being easily startled, or having problems concentrating or sleeping).”

Rates of mental health problems didn’t differ significantly between aHUS or iTTP patients, nor did their prevalence vary based on how long it had been since the clinical episode that first resulted in their hospitalization.

The risk of PTSD was highest among those being treated or who had very low platelet counts when they were initially hospitalized, statistical analyses suggested. Males were significantly less likely to have PTSD.

On measures of quality of life, those with PTSD scored significantly lower on average than those without it, especially regarding pain and comfort with one’s own body. People with PTSD were more likely to have anxiety or depression and more likely to report weight gain, the researchers said.

About half of the aHUS patients in the study had been treated with Soliris. Analyses of mental health outcomes showed comparable results regardless of Soliris treatment. Those treated with Soliris tended to report better quality of life, however.

Researchers noted this study is limited by its small sample size. They also emphasized that, while patients in it met the criteria for PTSD and other psychiatric disorders on screening tests, the tests aren’t intended to establish a diagnosis, which requires additional psychiatric evaluation.