A team of investigators evaluated knowledge gaps among patients with thrombotic thrombocytopenic purpura (TTP) in remission and found a range of levels of understanding of the condition. Findings were published in Hemasphere, a journal powered by the European Hematology Association.

The study authors explained that acute TTP episodes are associated with a risk of relapse, and awareness of this risk is important for patients who have experienced acute TTP in order to ensure effective management of the condition.

The study was based on a questionnaire assessing TTP literacy that was supplied to 120 patients identified through the French National Registry for Thrombotic Microangiopathies. Questions were oriented around the characteristics of patients with TTP in remission, their understanding of the condition, and their approach to an emergency related to the condition. TTP literacy was categorized as low, intermediate, or high.

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Most patients (73%) had experienced 1 TTP episode, and 27% had experienced more than 1 such event. Overall, low TTP literacy was found in 24% of patients, while 43% showed intermediate literacy, and 33% showed high literacy. Advanced age and attainment of a more limited education level were both significantly linked to low TTP literacy, according to the study authors.

There were some specific gaps in knowledge around TTP in this study. Most participants showed awareness of the role of medical follow-ups in mitigating the risk of relapse, but participants tended to underestimate the risk overall. Also, while most patients were aware of the need for plasma exchange during the acute phase, the necessary timing of this treatment was less well understood. Nearly one-third (29%) of female patients younger than 40 years of age in this study were unaware of the greater risk of relapse posed by pregnancy.

The significance of von Willebrand factor to TTP was the least commonly understood item in the questionnaire, while questions related to ADAMTS13 showed higher levels of understanding.

The majority of patients did not provide responses to questions regarding how to approach an emergency, with only 27.5% of participants responding to questions related to this topic.

“In this pioneering study exploring the health literacy in TTP patients, we report that our patient cohort had substantial knowledge about TTP,” the investigators wrote based on the fact that most patients had at least an intermediate understanding of the condition.

Nonetheless, the study authors did note some potentially addressable gaps in knowledge. They concluded that education of patients with TTP should take account of patient characteristics such as age and education and that attention must be paid in materials to items such as what events occur prior to TTP, factors that may affect risk, and important actions to take during an emergency.

Disclosures: Some authors have declared affiliations with or received grant support from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.


Pereira LCV, Ercig B, Kangro K, et al. Understanding the health literacy in patients with thrombotic thrombocytopenic purpura. Hemasphere. 2020;4(4):e462. doi:10.1097/HS9.0000000000000462