Study of the Week: One of Four Atypical Hemolytic Uremic Syndrome Patients Have PTSD

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest or importance and go more in-depth. In this story we will talk about the details of the study and explain why it’s important, who will be impacted, and more.

If you read our short form research stories and find yourself wanting to learn more, you’ve come to the right place.


This week’s study is…

Post-traumatic stress disorder and quality of life alterations in survivors of immune-mediated thrombotic thrombocytopenic purpura and atypical hemolytic and uremic syndrome

We previously published about this research in a story titled “A Significant Number of People with aHUS Have Anxiety, PTSD” which can be found here. The study was originally published in the scientific journal Journal of Clinical Care. You can read the abstract of the study here


What Happened?

Mental health problems are often overlooked comorbidities in people that live with rare disorders such as atypical hemolytic uremic syndrome (aHUS). Rare diseases, due to difficulties surrounding their diagnosis, treatment, and overall recognition in the medical field and in society at large, can present a unique challenge to mental health and stability for patients.

The study included 51 people living with the disease as well as 52 people living with a related condition called immune-mediated thrombotic thrombocytopenic purpura (iTTP). The goal was to compare the mental health state and quality of life between survivors of the two diseases. 75 percent of these patients were women, with a median age of 39 years. The survey was conducted a mean of six years after patients had been diagnosed and treated. These patients had all received care at French intensive care centers.

Based on the survey results and the use of standard mental health assessments, half of the patients were determined to have clinically significant anxiety. Meanwhile, 14% has clinically significant depression. 27% of the patients met the criteria for a diagnosis of post-traumatic stress disorder (PTSD). The researchers found that rates of mental health problems varied little between patients with aHUS and iTTP. 

The scientists found that the risk of developing PTSD appeared to be highest in those patients that had been receiving treatment most recently or who had extremely low platelet counts when admitted to the hospital. Male patients were less likely to develop the disorder. Patients with PTSD had lower quality of life scores, especially with respect to comfort within one’s own body and pain. They were also more likely to have gained weight and face the other mental health diagnoses measured in the study.

The researchers concluded the study by recommending mental health screenings for symptoms suggesting PTSD or other mental disorders in patients, in hopes that “Early referral and treatment might improve patient outcomes.”

The scientists acknowledged that the study has some limitations, such as a small sample size and the fact that while patients met the standards for mental disorders based on the screening tests, further evaluation from a psychiatrist is required to confirm the diagnoses.

About Atypical Hemolytic Uremic Syndrome (aHUS)

Atypical hemolytic uremic syndrome is a very rare, progressive, and potentially life-threatening illness which is most characterized by the formation of blood clots in many small blood vessels within the body. In at least some cases, atypical hemolytic uremic syndrome is the result of mutations affecting proteins that regulate the complement system, a component of the immune system. The uncontrolled activity of this system is what allows for the disease symptoms to appear, which can include fatigue, swelling, diarrhea, vomiting, abdominal pain, confusion, seizure, coma, kidney failure, heart attack, and stroke. This disease may appear alongside other illnesses as well. Treatment for this disease may include kidney transplant, plasma exchange/infusion, the drug eculizumab, and dialysis. More effective treatments are greatly needed for this illness, as patients have poor outcomes and overall quality of life. To learn more about atypical hemolytic uremic syndrome, click here.

Why Does it Matter?

PTSD is a psychiatric disorder that can occur in people that have experienced a traumatic event, such as warfare, sexual assault, natural disasters, car accidents, and more. In this study, it seems clear that aHUS is also capable of triggering the disorder due to the sudden, painful, and life-threatening symptoms.

PTSD is not often associated with medical emergencies, decreasing the chance of a diagnosis in people with aHUS or related disorders. The findings of this study should be a wakeup call for physicians treating people with this extremely rare illness. As a whole, people living with rare diseases often have the mental burdens of their disease overlooked.

Symptoms of PTSD include disturbing and uncontrolled thoughts, nightmares, and emotions that are related to the traumatizing event. PTSD may cause an affected person to avoid trauma-related cues, trigger changes in thinking (such as dissociative flashbacks), and increase risk of self-harm or suicide. If you recognize any of these symptoms in a loved one, seek professional help as soon as you can.

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