What can clinicians do to help minimize the psychological impact associated with VTE?
Dr Kline: The first element is to provide immediate reassurance. “We found the cause of your symptoms, and we know how to treat it” is a good starting place. The second is to take time to explain clots, and that they are a natural part of our health, and that many people’s systems tend to balance more toward clotting than bleeding. Discuss the evidence-based pros and cons of genetic testing, recognizing little benefit. Talk about what anticoagulation means to their lives, including issues of menstruation, childbearing, and hobbies.
Educate patients that what they can do to help themselves, besides take anticoagulants, includes smoking cessation and addressing metabolic syndrome with statins, exercise, and diet, as appropriate. Refer patients to advocacy groups such as the National Blood Clot Alliance and the North American Thrombosis Forum to find peer support groups.
Dr Hunter: There are several things that clinicians can do to better support these patients, including reassuring patients that it is quite common to feel anxious after VTE. Normalizing anxiety following VTE reduces the stigma some people may feel about talking about it. Many people feel they shouldn’t complain, especially if doctors have saved their life. This is not helpful, because not sharing worries or keeping anxieties hidden only leads them to grow and can lead to difficulties if they become chronic. It also means that people can’t get the support they may need.
By introducing the potential and commonality of experiencing anxiety after VTE, we enable conversations that can be hugely reassuring to our patients. For some, this acknowledgement is enough for them to start talking to family and friends and seek further support.
If you have the resources and expertise to discuss anxiety management with patients, this can be really helpful. Providers can put together some “go-to” resources to give to patients, including information about self-help strategies, simple self-care tools, or even specific anxiety management resources from VTE charities such as the ones we helped to develop with Thrombosis UK.
As a clinician, don’t assume that because one person’s VTE may be considered “milder” or more manageable, they are less likely to experience anxiety. Anxiety often doesn’t relate to this at all and can often be more related to the way a person interprets their risks and the support they have available to them. Be sure to ask questions about their understanding of the risk — often patients’ anxieties are based on misinformation or misunderstandings, and this can be easily rectified.
Follow up on patients. Checking in on their emotional well-being during consultations is just as important as assessing their physical health. By including these conversations, we send a message to patients that emotional wellbeing is important, and this in turn can encourage them to seek support, talk to family and friends, or even reach out for professional support.
If anxiety or psychological difficulties seem to be chronic or are causing the patient ongoing distress, consider speaking with them about seeking a referral for professional support. Anxieties or trauma symptoms after VTE often resolve over time and with the support of family and friends and the medical team. But if these symptoms persist for more than 3 months and are significantly impacting the individual’s day-to-day life and recovery, then it may be time to seek help from a specialist.
What are some key remaining needs in this area in terms of research and education?
Dr Kline: The next step is to produce and validate a reliable questionnaire to measure communication effectiveness specifically for patients with clots that shows good agreement and reliability with findings from qualitative interviews, which require great effort and expertise. After that, we need to use an agile science approach to implement the tools, processes, and strategy to improve communication between providers and patients with clots.
Dr Hunter: The VTE patient community have been asking for their emotional and psychological needs to be better understood and supported for a long time. It seems like this is starting to happen, but still more research is needed to help us better understand patients’ experiences all the way from diagnosis right through to recovery. More education is needed for healthcare providers working with people who have experienced VTE, from primary care to specialist services, to help us better support patients. In particular, more funding is needed for specialist psychological and emotional support for patients.
It’s important that we understand and support the psychological and emotional needs of patients, not just for their wellbeing and quality of life, but also because this will have a wider impact on their physical health outcomes. If we can better understand our patients’ needs — physical and psychological — then we can respond to them more effectively. This can positively impact things like treatment adherence and wider health-protective behaviors such as engaging in exercise and improving diet.
Additionally, clinicians should keep in mind that not everyone will feel anxiety following VTE. We shouldn’t assume they will, but we can enable the conversations and provide support for those who do. We need to acknowledge that from a psychological perspective, the circumstances of VTE and its treatment and ongoing risk may provide the perfect environment for anxiety and ongoing illness-related trauma. It’s important that we have the conversations and tools to respond the best we can.
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