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Having a blood clot can be a life-altering event. Research shows that in addition to physical symptoms (such as pain or swelling), patients may experience a range of mental health issues after a clot, including anxiety, depression, and post-traumatic stress disorder (PTSD).
Last month (May 2021) was Mental Health Awareness Month, a campaign to fight stigma around mental illness. As part of this important initiative, we spoke with Dr. Kerstin de Wit to better understand the connection between blood clots and mental health. Dr. de Wit is an emergency room physician, thrombosis specialist, and researcher at Queen’s University in Kingston, Canada.
Q: You recently published a study on the psychological impact of pulmonary embolism (PE), a blood clot in the lungs. What encouraged you to research this topic?
The mental health aspect of blood clots is something that I’ve thought about for many years. In both my clinic and the emergency department, patients who’ve previously had a blood clot will often return because they think they’re having another one; they have a nagging pain, a tightness in their chest, maybe trouble breathing, and they’re extremely worried. I usually find that these patients are not having another blood clot. However, I think I’m doing my patients a disservice by simply telling them that they’re fine. What’s important is helping them navigate the worry and anxiety that they’re experiencing – but we don’t really have a well-defined pathway to do that.
I also realized that I wasn’t really addressing the “psychology of thrombosis” in my clinic, so the logical starting point for our study was trying to figure out how many of my patients were experiencing psychological distress. Beyond that, I also wanted to understand what type of effects patients encountered. For example, were they coping with generalized anxiety or was their anxiety more extreme? Were they actually experiencing PTSD?
Q: What did you find, and did any of these findings surprise you?
We used a checklist-type questionnaire, which was given to patients on a tablet in the waiting room while they were waiting to be seen. About half of the patients who completed the questionnaire also agreed to be interviewed as part of their appointment in the clinic.
Based on the survey results and interviews, we found four primary associations with psychological distress:
- Many patients recalled their diagnosis as a traumatic experience. One participant said that the nurse pulled the curtain around and told him, “You’re lucky to be alive.” I mean, that’s an important finding – that the person who tells you that you have a blood clot might potentially have a bearing on ongoing distress.
- The patients who had ongoing distress also remembered having very severe symptoms when they were first diagnosed. So, maybe memory of those symptoms prompted ongoing trauma.
- People with distress were often worried about having another blood clot – or they were scared that they’d already had another one. The fear of recurrence was something that played heavily on their minds.
- Patients frequently preferred to stay on their blood thinners to prevent a future clot and also believed that their lives were somewhat reliant on taking the blood thinners; in other words, they worried that they may die if they stopped their blood thinner.
Importantly, we also found that two out of 72 people had a tentative diagnosis of PTSD. Some might say that two out of 72 is not a large number, but if you surveyed 72 people on the street, I don’t know that you’d find two of them with PTSD. This study was not large in scale, but there’s a signal there that after having a PE, there’s psychological distress – sometimes very extreme psychological distress. Even more surprising was that 50% of people in our clinic reported having ongoing distress – and we weren’t offering them any support.
Q: What would you tell patients who are coping with ongoing distress after a clot?
I really believe that patients will never have physical health unless they have mental health as well. The two are so closely related. To help patients live a full life, I think, we as healthcare providers have to address the mental health and psychology as well as the physical symptoms of blood clots. We need to start addressing these issues and have some solutions to offer patients, whether it’s a referral to counseling or information on managing anxiety. Education is also fundamental and patients should know the facts about blood clots – what they are, how to treat them, how anticoagulation can help, etc.
Lifestyle is also extremely important. Everybody has things in life they like to enjoy, so I try to encourage patients as much as I can to get back to their activities safely. We know that being on a blood thinner can increase the risk of bleeding, so patients sometimes stop doing what they love because they’re afraid of a bleed. My job is to have an open conversation with my patients about the risks of bleeding on an anticoagulant, but they ultimately have to weigh the pros and cons. I want people to go out for walks when they feel better and to then slowly return to other things that they enjoy.
It’s also worth mentioning that the most common symptom after a blood clot is exhaustion and fatigue. So, be kind to yourself and rest when you need to. For the first couple of months, you might not feel like yourself; you might feel like resting is all you can do, and that’s okay because that’s part of this disease. Your body needs to rest and heal. Listening to yourself is important as well.
Our study also indicated to some extent that filling out the questionnaire in our clinic was the first time these patients admitted to having distress. Often, patients don’t come forward to discuss their distress with their provider; they don’t feel comfortable discussing mental health. If you do have questions or concerns, please tell us so that we can help.
Finally, I’d urge patients to participate in support groups if they can access them. These groups are immensely helpful. Patients have said to us, “I thought I was alone, I didn’t realize anybody else felt this way,” and these groups have made them feel like part of a community.
I’ll end with this: if you’ve had a blood clot, it definitely becomes part of your life story – but it should never define you or change you as a person because you’re still you. The person you were is the person you are after that blood clot. Psychological stress may also be part of your story, and that is nothing to be ashamed of.
Interested in learning more about diagnosis or joining a patient support group? Check out some of our resources!
National Institute of Mental Health. https://www.nimh.nih.gov/.
Tran A, Redley M, de Wit K. The psychological impact of pulmonary embolism: A mixed-methods study. Res Pract Thromb Haemost. 2021;5:301-307. https://doi.org/10.1002/rth2.12484
Hunter R, et al. Long-term psychosocial impact of venous thromboembolism: a qualitative study in the community. BMJ Open. 2019;9:e024805. https://bmjopen.bmj.com/content/9/2/e024805
Noble S, et al. Long-term psychological consequences of symptomatic pulmonary embolism: A qualitative study. BMJ Open. 2014;4(4):e004561. doi: https://bmjopen.bmj.com/content/4/4/e004561
*Originally published in The Beat – June 2021. Read the full newsletter here.