Background: Important aspects of post-venous thromboembolic (VTE) syndrome are dyspnea, pain, anxiety, depression and post-traumatic stress disorder (PTSD). The correlations between all of these features and their impact on functional outcomes and quality of life (QOL) are not well studied and thus poorly understood.

Aims: To evaluate features of post-VTE syndromes and their impact on functional outcomes and QOL.

Methods: Twelve validated instruments focusing on several determinants of well-being that play important roles in recovery after VTE were included in an anonymous survey aimed at exploring patient relevant outcomes after VTE (Table 1). The survey was placed on the website of National Blood Clot Alliance, a patient advocacy organization, and online via Facebook, Instagram, LinkedIn and Twitter™ to better understand the degree and impact of PTSD in adults (>/=18 years of age) diagnosed with pulmonary embolism, deep vein thrombosis, or both.

Results: 3372 people took the survey between August 2021 and January 2022. Respondent characteristics are described in Table 2. 75% of participants report feeling moderately anxious or depressed, 60% report having moderate or extreme pain, 53% have some or major problems with performing their usual activities and 40% get sudden feelings of panic quite or very often. Because the survey only recently closed, additional analyses are currently being conducted to learn about the prevalence of each determinant as well as how they impact and correlate with one another. Results will be shared at the conference.

Conclusion(s): This is the largest collection of surveys aimed at investigating the frequency and degree of dyspnea, pain, anxiety, depression, PTSD and post thrombotic panic syndrome in patients diagnosed with VTE and their impact on functional outcomes and health-related QOL. The information collected and analyses generated from these surveys will provide a greater understanding of these important issues and will help guide future patient care, education and research.

Table 1

Table 1. Names of the validated tools included in the on-line anonymous survey

Table 2

Table 2. Respondent Characteristics

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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/the-clues-study-a-critical-look-at-understanding-the-emotional-suffering-of-blood-clot-survivors/