CardioExchange Archive

The evaluation of the care and outcome of patients with venous thromboembolism is often focused on the visible short-term effects of a clot, such as: Has the acute clotting episode resolved? Are chronic pain, swelling, or other post-thrombotic issues well managed? Has there been any bleeding associated with anticoagulation? Has there been a VTE recurrence? Often overlooked is consideration of a patient’s emotional state and the impact VTE has on the patient’s quality of life.

I direct a program at the University of North Carolina at Chapel Hill that provides information about venous thrombosis, thromobophilia and anticoagulation via a website called ClotConnect. This work brings me into contact with a diverse mix of VTE patients from around the country.

Patients most often have concrete educational needs. They want to understand:

• Why did I develop a clot?
• How long will I need to take an anticoagulant?
• How can I manage post-thrombotic complications?
• How can I keep a stable INR?

Since the clinical impact of VTE is well-known, developing resources to meet these educational needs has been somewhat straightforward.

But VTE patients have also expressed a depth of unmet emotional needs which are far more difficult to address. As an example, consider the following excerpts from recent posts by VTE patients on our program’s discussion board and social media forums which reflect the emotional impact of VTE:

I didn’t realize the mental burden the clot would have. Five years later and anytime I have a symptom — my mind automatically thinks there’s the possibility it could be a clot!

It was one of the scariest things I’ve had happen to me, not to mention all of the things you have to go through afterwards (i.e. the injections). I cried for the first week.

While I’ve fully recovered, play sports, do stuff with my family, and live a normal life, it never leaves you completely, the details, the memory of not being able to take a breath. I still get a little chill when I think about it. What a thing.

It is a constant worry it will happen again. The fact is that this event takes a huge emotional toll on you!

Knowing I had a clot put me in an emotional whirlwind and I just wish I had someone telling me ‘it is going to be ok, we’re doing everything we can to make this better’ but I never got that.

It’s good to know that I’m not the only one who was overwhelmed after being diagnosed with a DVT; it was truly life changing.

I have a fear of dying suddenly.

I have been struggling with dealing with the aftermath of this life changing event.

Immediately after diagnosis you don’t really have time to assess the emotions. You’re kind of on auto pilot. Couple of years later, it catches up with you.

I think of my husband witnessing my collapse in our home, an image that still haunts him even now.

Emotional states (such as depression, anxiety, happiness, and optimism) have been shown to influence health outcomes in many medical conditions, including cardiovascular disease. This is one reason why we see the provision of robust psychological support services for patients in a range of life-threatening and lifestyle-impacting medical conditions.

While VTE is also life-threatening and lifestyle-impacting, we don’t see the widespread provision of support services for these patients. In many clinical practices, there is no systematic approach taken to addressing the psychological needs of patients with VTE. There are very few in-person support groups in the US for persons affected by VTE. The utilization of advice helplines and social workers to assist VTE patients is limited. The psychological effects of VTE are both understudied and underserved.

A more detailed discussion of what is known about the psychological impact of VTE and what clinicians can do can be found at: http://professionalsblog.clotconnect.org/2012/02/28/psychological-impact-of-dvt-and-pe/