Background: Beyond recurrent venous thromboembolism (VTE), major bleeding and death, quality of life (QOL) and functional ability are highly relevant clinical outcomes of VTE survivors. However, these features and other important determinants of well-being have not been well explored.

Aims: To investigate the long term functional limitations in VTE patients.

Methods: The Post Venous Thromboembolism Functional Status (PVFS) Scale was one of twelve validated instruments included in an anonymous survey aimed at exploring functional limitations, pain, dyspnea, depression, post-traumatic stress disorder (PTSD) and post thrombotic panic syndrome in VTE patients. The survey was circulated online (website of National Blood Clot Alliance), and via social media (Facebook, Instagram, LinkedIn and Twitter™) to better understand the long-term impact of pulmonary embolism (PE) and deep vein thrombosis (DVT).

Results: 3372 people took the survey between August 2021 and January 2022 (Table 1). Of the 2924 who completed the PVFS portion of the survey, during their everyday life, 13% report no limitations and no symptoms, pain, depression, or anxiety (SPDA), 38% report negligible limitations although still have persistent SPDA, 31% suffer from limitations, occasionally needing to reduce usual activities due to SPDA, 16% are not able to perform all usual activities due to SPDA and 2% are dependent on nursing care due to SPDA. Figure 1a and 1b correlate PVFS with anxiety or depression and pain or discomfort, respectively. Analyses correlating PVFS with QOL, dyspnea and functional abilities are underway and will be presented at the conference.

Conclusion(s): This is the largest survey aimed at investigating the long-term functional limitations that may be present after a VTE. Half of the respondees reported moderate to severe functional limitations, which was associated by a higher prevalence of depression, anxiety and pain. Understanding how these health determinants affect outcomes is crucial to improve the care for these patients.

Table 1

Table 1. Respondents Characteristics

Figure 1a and 1b

Figure 1a. Post Venous Thromboembolism Functional Scale stratified by anxiety or depression, the latter as measured by the Hospital and Anxiety Depression Scale -HADS-.
Figure 1b. Post Venous Thromboembolism Functional Scale stratified by pain or discomfort, the latter as measured by the Patient-Reported Outcomes Measurement Information System -PROMIS- Adult ShortForm v1.0 Pain Intensity 3a.

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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/patients-reporting-on-relevant-functional-limitations-following-an-episode-of-venous-thromboembolism-the-post-venous-thromboembolism-functional-scale/