Although mortality rates associated with venous thromboembolism (VTE) have decreased in recent decades due to earlier diagnosis and anticoagulation, significant gaps remain in addressing the psychological sequelae of the condition. VTE often represents a traumatic event for patients, many of whom report ongoing anxiety, panic, and depression related to the experience.1-3 However, these issues may go unrecognized and may be inadvertently exacerbated by clinicians.4,5
Several studies based on patient interviews have shed light on some of the psychological effects associated with VTE. A 2019 longitudinal qualitative study published in BMJ Open included semistructured interviews with 11 patients (64% female) who had experienced VTE within the previous year. Participants “reported being forever changed by the experience,” with “continued high levels of trauma and anxiety symptoms” related to VTE.2
In research described in 2021 in Research and Practice in Thrombosis and Haemostasis (RPTH), Tran et al examined psychological symptoms in 72 individuals (63% female) with a previous diagnosis of pulmonary embolism (PE). Based on self-reported data and semistructured interviews, they found that approximately one-half of participants experienced ongoing psychological distress following PE.
These individuals “often recalled painful symptoms, recalled diagnosis delivery as stressful, worried about PE recurrence, and had anxieties about stopping their anticoagulant medication,” according to the report. However, roughly two-thirds of patients indicated that they had not sought professional mental health treatment for these symptoms.3
A qualitative study published in 2022 in RPTH explored the impact of clinician communication regarding VTE diagnosis among 24 patients (63% female) treated in emergency departments in the midwestern United States. Results of semistructured interviews suggest that providers’ verbal and nonverbal communication can increase the psychological distress that patients experience in this situation.4
To further discuss these findings and ways for clinicians to improve communication and support regarding VTE, we interviewed the following experts: Jeffrey Kline, MD, professor and associate chair of research in the department of emergency medicine at Wayne State University School of Medicine in Detroit, and lead author of the 2022 study4 described above; and Rachael Hunter, PhD, clinical psychologist, senior lecturer, and researcher at Swansea University in Wales, United Kingdom, and lead author of the aforementioned 2019 study.2
What is known about the psychological effects of receiving a VTE diagnosis?
Dr Kline: Patients commonly express the question “Why me?” a question that starts at the time of diagnosis and often persists for years afterward. They wonder whether the clot problem itself or the treatment will change aspects of their lives such as work, family, and hobbies. Others have concerns about recurrence or even death. Some want full genetic testing, although studies have shown that, in general, this does not reduce anxiety.6
Dr Hunter: Studies show that while some people cope very well with experiencing VTE, for others the experience can be very challenging and have a significant impact for a range of reasons. Firstly, VTE can often happens suddenly and unexpectedly, and for some people, it can be a life-threatening event. As such, it may leave them hypervigilant to future threats, and some may experience heightened anxiety and even post-traumatic symptoms.
A lot of VTE patients report feeling very anxious in the period following VTE, and this can be problematic because symptoms of anxiety — in particular, panic — can mirror the features of a pulmonary embolism. This leaves some patients feeling unsure if they are experiencing a VTE or a panic attack.1
Secondly, the risk of future VTE, which is often made very clear to patients, can also be really worrying for people. In particular, we know that once a person experiences a VTE, they are at increased risk of future VTE and that future VTE are likely to increase in severity unless managed appropriately. This can feel really frightening for patients, and it also means that someone who experiences a fairly nebulous DVT may still feel really anxious about the future.
Thirdly, anticoagulation therapy carries its own risks, and so patients must not only adapt to the VTE itself but also the risk associated with the recommended treatment.
What are some of the factors that contribute to these VTE-related psychological issues?
Dr Kline: Lack of reliable information plays heavily into this. While in the hospital, many patients with clots can’t even state why they are receiving anticoagulants. Some believe they’ve had a heart attack. Some hear exaggerated language such as, “You almost died,” which contributes to long-lasting ruminations and fear. After discharge, patients seek information from family, friends, and the internet, some of which is misleading.
Dr Hunter: Reminders of the VTE can exacerbate symptoms of anxiety or trauma, keeping the patient stuck in a vicious cycle. For example, taking medication or even being in the environment where the VTE occurred could remind the patient not just of the VTE event, but also the potential for future VTEs. An important reminder for patients were long-term physical symptoms experienced as a result of the VTE, such as pain or breathlessness. Not only did these remind the patient of the VTE and the risk of future VTE, but they could also trigger emotions associated with the diagnosis and management of their condition.
In particular, because of the difficulties in diagnosing VTE, many patients may have experienced misdiagnosis or missed diagnosis. This can lead to feelings of frustration or anger, and long-term physical symptoms may reinforce these feelings as a constant reminder, keeping patients stuck in feelings of anger or resentment.2
Finally, it’s important to emphasize that there is very little public awareness of VTE or blood clots. This lack of awareness can translate into a lack of empathy and support from family and friends, leaving people feeling isolated and contributing further to emotional and psychological effects.
It is also important to consider the individual’s own specific circumstances and history. For example, if a person has experienced mental health difficulties prior to VTE, this may — but not necessarily — make them more vulnerable to difficulties when facing a physical health event. The patient’s social circumstances may also be important to consider. For example, if the individual now has to leave their job or occupation because of the VTE, this could have a big impact emotionally as well as financially.
Finally, if your patient seems worried about their treatment in any way, it’s important to try and discuss this with them, especially in the case of anticoagulation. Sometimes we can dismiss patients’ worries without allowing them to share their concerns about treatments, and this can be detrimental. Some VTE patients feel worried about taking long-term medications or may have fears about the implications of this. An empathic conversation early on, allowing them to share and acknowledging their concerns, can be very reassuring.