Survivors of acute immune-mediated thrombotic thrombocytopenic purpura (iTTP) or atypical hemolytic-uremic syndrome (aHUS) report substantial mental-health symptoms and quality-of-life impairments, according to research published in the Journal of Critical Care.

Researchers surveyed adults with thrombotic microangiopathies (TMA), either iTTP or aHUS requiring ICU admission between January 2010 and January 2020, via a follow-up telephone interview between 1 to 10 years after the acute episode. They assessed symptoms of anxiety, depression, and posttraumatic stress disorder (PTSD) as well as quality of life using the 36-item Short Form questionnaire (SF-36).

Patients who were treated with caplacizumab were excluded from the study. The primary outcome was the prevalence of PTSD-related symptoms among the patients.

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Of the 181 survivors who met the study inclusion criteria, 103 completed the follow-up interview (74% women; iTTP, n=52; aHUS, n=51). Patients had a median age of 39 years (interquartile range [IQR], 31-54), and 38% were still receiving treatment. The median time since TMA onset was 72 months (IQR, 48–84), and patients reported a median of 9 physician visits (IQR, 5–11) for TMA after hospital discharge.

The survey revealed symptoms of anxiety in 50%, PTSD in 27%, and depression in 14% of patients. No significant differences were observed between the iTTP and aHUS groups.

Patients with PTSD symptoms reported significantly greater weight gain and significantly worse perceived physical or emotional wellbeing, anxiety symptoms, and depression symptoms than patients without PTSD symptoms.

Results of the SF-36 indicated significantly greater quality-of-life impairments in patients with versus without PTSD symptoms and in those with aHUS and PTSD versus those with iTTP with or without PTSD.

In a multivariable analysis, 3 factors were independently associated with PTSD symptoms: male sex (odds ratio [OR], 0.11; 95% CI, 0.02-0.53), platelet count ≤20 G/L at acute-episode presentation (OR, 2.68; 95% CI, 1.01-7.38), and current TMA treatment (OR, 2.69; 95% CI, 1.01-7.36).

“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 authors concluded.

Limitations of the study included the inability to compare telephone interview respondents and nonrespondents (response rate, 57%) as well as the exclusion of patients with Shiga toxin-associated HUS or secondary HUS. The study also had a single follow-up interview that did not provide information about whether the symptom improvement or worsening with time, investigation of only mental-health symptoms and quality of life (not cognition or neurological function), exclusion of patients treated with caplacizumab, potential time-lapse bias, and use of instruments that screen for, but do not establish the diagnosis of, PTSD, anxiety, and depression.

Disclosure: One study author declared affiliations with biotech, pharmaceutical, or device companies. Please see the original reference for a full list of authors’ disclosures. 


Azoulay E, Souppart V, Kentish-Barnes N, et al. Post-traumatic stress disorder and quality of life alterations in survivors of immune-mediated thrombotic thrombocytopenic purpura and atypical hemolytic and uremic syndrome. J Crit Care. Published online March 15, 2023. doi:10.1016/j.jcrc.2023.154283