Patients Reporting of Breathlessness after Experiencing Venous Thromboembolic Event

Background

The main emphasis of current care for patients who experience venous thromboembolism (VTE) - and objectives of therapeutic trials - is to prevent recurrent VTE, anticoagulant-associated major bleeding and death. These clinical outcomes are critical to capture and study, but they do not explore the long-term patient centered aspects after a VTE such as anxiety, depression, dyspnea, functional status, pain, post-traumatic stress disorder (PTSD), and quality of life. Post-pulmonary embolism syndrome has only recently been recognized as a potentially debilitating long-term consequence of acute pulmonary embolism (PE). Furthermore, the determinants of well-being have not been explored as they relate to a patient's degree of breathlessness.

Aim

To investigate if a patient's degree of dyspnea impacts the long term functional and psychological outcomes after VTE.

Methods

An anonymous survey, the CLUES study, (A Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors) included twelve validated instruments aimed at exploring patient centered outcomes after VTE. The survey was placed on the website of the National Blood Clot Alliance, a patient advocacy group, and online via Facebook, Instagram, LinkedIn and Twitter™. Adults (>/=18 years of age) diagnosed with PE, deep vein thrombosis (DVT), or both were invited to take the survey. To explore breathlessness, the Medical Research Council (MRC) Dyspnea Scale, which allows patients to indicate the extent to which their breathlessness affects their mobility using a scale of 1 to 5, was one of the instruments included in the survey. Kendall's tau-B test was used to test for associations.

Results

3372 people took the survey between August 2021 and January 2022. The majority of participants were female (86.2%) with a mean age of 43 years (range 18-70). 5.4% were current smokers, 1.7% had cancer and 12.1% tested positive for COVID. 79.3% were on anticoagulation. 36% had PE, 22% had DVT, 42% had both and 35% had more than one VTE. The majority of participants (54.4%) had their VTE >12 months prior to taking the survey with 26.2% experiencing their event 3-12 months prior.

Of the 2705 participants who took the MRC Dyspnea Scale, 34.9% reported a score of 3 or more (Figure 1). Respondents who reported more breathlessness had more patient-relevant functional limitations as assessed by the Post-VTE Functional Status (PVFS) Scale (Figure 2; Kendall's tau b 0.479; p<0.001). There was also a strong correlation between the MRC Dyspnea Scale and depression (Kendall's tau b = 0.308; p<0.001). There was a moderate correlation between the MRC Dyspnea Scale and anxiety (Kendall's tau b 0.245, p<0.001) and the MRC Dyspnea Scale and PTSD (Kendall's tau b 0.281; p<0.001). There was no correlation between the MRC Dyspnea Scale and time since most recent VTE nor MRC Dyspnea Scale and age. There was also no correlation between the MRC Dyspnea Scale and smoking although the number of smokers who took the survey was small.

Conclusions

This is the largest survey aimed at investigating how dyspnea correlates with the long-term emotional effects and functional status among patients diagnosed with VTE. Only one third of this highly self-selected group of participants reported no degree of breathlessness except during strenuous exercise. Breathlessness strongly correlated with PVFS and depression and moderately correlated with PTSD and anxiety. The information gleaned from this survey is providing a greater understanding of important patient relevant issues and should be used to help inform future patient care, education and research.

Rosovsky:Penumbra: Consultancy; BMS: Consultancy; Janssen: Consultancy; Inari: Consultancy; abbott: Consultancy; dova: Consultancy. Klok:Dutch Heart Foundation: Research Funding; Boehringer Ingelheim: Research Funding; Bristol-Myers Squibb: Research Funding; Netherlands Thrombosis Foundation: Research Funding; Daiichi Sankyo: Research Funding; MSD: Research Funding; Actelion: Research Funding; Bayer: Research Funding.