Beth Waldron, Program Director of Clot Connect, writes…
The patient diagnosed with VTE (venous thromboembolism) may develop depression and anxiety, particularly if the clot was extensive and life-threatening. However, evaluation of the care and outcome of patients with VTE is often focused upon 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? However, a comprehensive evaluation should include a consideration of a patient’s emotional state and the impact of the VTE event on the patient’s quality of life. Emotional states (such as depression, anxiety, happiness and optimism) have been shown to influence health outcomes in many medical conditions, including cardiovascular disease.(,,) In respect to VTE, however, very little research has been done examining the psychological impact of VTE on a patient’s health outcome.
What is scientifically known about the psychological impact of VTE?
- VTE itself is an acute and life-threatening medical event. Anxiety and depression are common mood responses early after diagnosis of acute conditions in general.(3,4)
- Both DVT and PE affect daily functioning, which can induce anxiety and depression. It is not uncommon for VTE patients to report pain, limited mobility, perceptions of impairments at home and work, and general feelings of stress associated with these impairments.(5)
- The use of warfarin and other anticoagulants is a factor leading to anxiety and depression.(4) This may be due to the lifestyle impact and close management of anticoagulants and/or patient worrying about bleeding risk.(,) Warfarin brings unique management issues which impact lifestyle and, therefore, may induce additional anxiety—issues related to frequent INR monitoring and close attention to diet and medication interactions. Having to self-inject subcutaneous low-molecular weight heparin or fondaparinux can be anxiety provoking for some patients. While self-injection fears have not been examined specifically among VTE patients, the fear of medication self-injection and its relationship to anxiety has been well documented in other diseases states, such as diabetes and multiple sclerosis.
- Patients with post-thrombotic syndrome, which occurs in ca. 40% of DVT patients, report lowered quality of life which may be attributed to chronic pain, swelling and impact on mobility.()
- Patients with pulmonary embolism have been shown to have significantly lower quality of life, impairment of physical performance and social activities, even among PE patients who do not experience complications such as pulmonary hypertension.(2) Additionally, difficulty breathing and lowered blood oxygen saturation levels experienced with acute PE are factors shown to lead to states of anxiety and depression.(4,) The association between dyspnea and anxiety has been documented across many disease states.
- The psychological impact of being diagnosed with a thrombophilia following a VTE event is unclear. While there have been studies examining the psychological impact of thrombophilia testing, results have been inconsistent or of limited scope to be widely applicable.(,) Additional studies are needed to more fully understand not only the emotional impact of thrombophilia testing itself on patients and families, but also the psychological impact of receiving a positive thrombophilia result in the immediate wake of an acute VTE event.
- The fear of a VTE recurrence is a commonly observed sentiment among VTE patients. However, a gap in the literature exists directly examining this fear perception and its impact on quality of life and health outcomes.
- Patients with unprovoked (idiopathic) VTE and patients with VTE caused by permanent risk factors have been shown to experience lower quality of life than patients whose clots were caused by transient risk factors.(2) This could be tied to the overall fear of clot recurrence, in that patients with VTE caused by transient risk factors may view the VTE as a ‘one-time event’ with a clearly identified cause which can be mitigated in the future, whereas patients with unprovoked, i.e. unexplained VTE, may worry more about a recurrent out-of-the blue event, as they do not have any modifiable/avoidable risk factors.
The psychological impact of VTE on patient health is an understudied area. The limited studies which have been done reinforce what is often witnessed anecdotally in patients, that DVT and PE do have a significant emotional impact on patients and their quality of life, not just immediately after diagnosis, but for years afterwards.
What can health care professionals do to address the emotional impact of VTE?
Since anxiety and depression have been shown to correlate with poorer health outcomes, such psychological factors should be considered in VTE patients for the most comprehensive care. Unfortunately, in many clinical practices, there is no systematic approach taken to addressing the psychological needs of patients with VTE. Additionally, while in other life-threatening and lifestyle-impacting medical conditions the provision of robust psychological support services exists (example: cancer support services), this is not the case with VTE. There are very few in-person support groups in the US for persons affected by VTE.
So, what can the health care professional do?
- Inform patients that feelings of anxiety and depressed mood following VTE are normal responses. Encourage them to be alert to changes in mood that do not improve or are accompanied by a withdrawal from activities or increased negative thoughts and tearfulness, as this may indicate a more severe depression requiring treatment.
- Assess patients for depression at follow-up appointments, especially in patients with ongoing pain, post-thrombotic complications or who are showing difficulty managing anticoagulation therapy.
- Consider anti-depressant therapy if indicated. Referral to a psychologist might, at times, be helpful, as well as involvement of a social worker to help with work related problems, temporary or permanent disability or financial issues.
- Aggressively try to prevent and manage post-thrombotic syndrome. Development of PTS has been shown to be the principal determinant of quality of life 2 years after DVT.(8) Compression stockings should be started as soon as possible after DVT for maximum effectiveness. Encourage their consistent use.
- Consider creating a formal support group for the VTE patients in your community. Connecting socially to other people with shared experiences has been shown to have positive health effects for patients.()
- Make patients informed of any support resources that exist in the community. While there are few in-person support groups, online groups exist. Clot Connect provides an online discussion and support forum where patients and families can connect to share information and experiences, and find support. The support forum can be found at: http://www.clotconnect.org/patients/support-forum
Patient comments reflecting the emotional impact of VTE
Below are excerpts from posts by VTE patients on Clot Connect’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 “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.”
 Enga KF, Brækkan SK, Hansen-Krone IJ, Hansen JB. Emotional states and future risk of venous thromboembolism. The Tromsø Study. Thromb Haemost. 2012 Feb 8;107(3). [Epub ahead of print]
 Klok FA, van Kralingen KW, van Dijk AP, Heyning FH, Vliegen HW, Kaptein AA, Huisman MV. Quality of life in long-term survivors of acute pulmonary embolism. Chest. 2010 Dec;138(6):1432-40. Epub 2010 May 21.
 Chida Y, Steptoe A. Positive psychological well-being and mortality: a quantitative review of prospective observational studies. Psychosom Med. 2008 Sep;70(7):741-56. Epub 2008 Aug 25.
 Liu CP, Li XM, Chen HW, Cui JY, Niu LL, He YB, Tian XL. Depression, anxiety and influencing factors in patients with acute pulmonary embolism. Chin Med J (Engl). 2011 Aug;124(16):2438-42.
 Lukas PS, Krummenacher R, Biasiutti FD, Begré S, Znoj H, von Känel R. Association of fatigue and psychological distress with quality of life in patients with a previous venous thromboembolic event. J Thromb Haemost. 2009 Dec;102(6):1219-26.
 Abray KD, Paul DW, Oliver JC, Robert MW. The impact of long-term warfarin on the quality of life of elderly people with atrial fibrillation. Age and Ageing. 2007;36:95–97.
 Geisa de Queiroz Almeida, Lúcia de ACB Noblat, Luiz Carlos Santana Passos,and Harrison Floriano do Nascimento Quality of Life analysis of patients in chronic use of oral anticoagulant: an observational study Health Qual Life Outcomes 2011; 9: 91.
 Kahn SR, Shbaklo H, Lamping DL, Holcroft CA, Shrier I, Miron MJ, Roussin A, Desmarais S, Joyal F, Kassis J, Solymoss S,Desjardins L, Johri M, Ginsberg JS. Determinants of health-related quality of life during the 2 years following deep vein thrombosis. J Thromb Haemost 2008; 6: 1105–12.
 Banzett RB, Pedersen SH, Schwartzstein RM, Lansing RW. The affective dimension of laboratory dyspnea: air hunger is more unpleasant than work/effort. Am J Respir Crit Care Med. 2008 Jun 15;177(12):1384-90.
 Cohn DM, Vansenne F, Kaptein AA, De Borgie CA, Middeldorp S.The psychological impact of testing for thrombophilia: a systematic review. J Thromb Haemost. 2008 Jul;6(7):1099-104.
 Hellman EA, Leslie N, Moll S: Knowledge and Information Satisfaction of Individuals with Factor V Leiden Mutation. J Thromb Haemost. 2003;1:2335-9
 Umberson D, Montez JK. Social relationships and health: a flashpoint for health policy. J Health Soc Behav. 2010;51 Suppl:S54-66.