Beth Waldron, Clot Connect Program Director writes….
The physical consequences of thromboembolism (VTE) [=deep vein thrombosis DVT and pulmonary embolism PE] have been extensively reported in the medical literature. Less documented has been the emotional impact of VTE on patients. This lack of formal study is notable given the extensive research on the psychological impact of other sudden, potentially life-threatening cardiovascular events (heart attack, stroke) which has provided clear evidence that such illnesses can result in significant psychological morbidity and contribute to adverse health outcomes.
A study recently published in BMJ Open (REF 1), is the first known qualitative study to look at the long-term psychological consequences of symptomatic pulmonary embolism (PE). The study found that the long-term consequences of a pulmonary embolism go far beyond the physical and that “the psychological consequences of experiencing VTE are considerable”. Additionally, patients expressed a high need for information and support which was unmet.
- The study was conducted among 9 outpatients who attended an anticoagulation clinic in a district hospital in Wales, England .
- Ages of participants ranged from 26 to 72 years of age and patients had experienced a pulmonary embolism between 9-60 months prior (median = 26 months)
- Data was obtained through semi-structured qualitative interviews and analyzed using interpretive phenomenological analysis to identify experience themes.
Three major themes emerged:
1. Participants described having a PE as a life-changing experience comprising initial shock, followed by feeling loss of self, life-changing decisions and behavior modification.
- A feeling of uncertainty about the future was prominent contributing to worry and anxiety about a clot recurrence.
- Anxiety was also expressed about not knowing a specific cause for their clotting event.
- Patients described hyper-vigilance about not knowing how to interpret physical sensations—ie ongoing pain, breathlessness, wondering ‘what is normal?’.
- Patients avoided activities that they felt might precipitate a future clot or contribute to bleeding risk while on anticoagulation.
2. Features of post-traumatic stress disorder (PTSD) were described as flashbacks, hyper-vigilance and intrusive thoughts being most prevalent. “Almost all participants volunteered symptoms suggestive of PTSD”. These included:
- Flashbacks to and memories reliving the initial PE experience were common.
- Several participants had a blunting of emotions after the PE experience by diassociating themselves from the experience.
- Patients reported hyper-vigilence and anxiety about symptoms that they felt could be potentially indicate a PE recurrence.
3. Participants identified several needs, including easier access to support through information to emotional support.
- The need for educational information was strong. “During the initial stages of diagnosis and treatment, participants required considerable information regarding their condition, their prognosis and long-term treatment.”
- Where information was not readily available, patients would seek information on the internet.
- All participants described needing a significant degree of support. The type of support needed was ongoing but changed over time from the initial acute event. Support needs were largely unmet.
My view of the implications of this paper:
The paper highlights an unmet clinical need and suggests that earlier psychological intervention may reduce the long-term consequences of a clotting event. Viewing pulmonary embolism through a psychological, and especially PTSD lens will be a new concept for many. The psychological impact of VTE is a surprisingly understudied, yet clinically important area. Emotional states have been shown in other medical conditions, including cardiovascular disease, to influence health outcomes. The study also highlights patients’ need for information. While there are some limitations to the study, as a first examination of the subject it provides a much needed starting place for additional discussion and investigation into this area.
What action can you take now based on this insight?
- First, know that you are not alone. It is normal to feel shock and anxiety following diagnosis of a blood clot.
- Connect with other patients for support. Connecting socially to other people with shared experiences has been shown to have positive health effects for other conditions.
- Don’t be hesitant to speak with your health professional about feelings of worry, fear, anxiety or depression.
- You and your family members should 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.
For health professionals:
- Be aware that your patients may be experiencing psychological distress related to their clotting event.
- 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.
- Aggressively try to prevent and manage complications, such as post-thrombotic syndrome. Development of PTS has been shown to be the principal determinant of quality of life 2 years after DVT [ref 2].
- Consider helping create 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.
Additional Clot Connect posts on this topic:
- For patients: http://patientblog.clotconnect.org/2012/02/28/psychological-impact-of-having-a-blood-clot/
- For HCP: http://professionalsblog.clotconnect.org/2012/02/28/psychological-impact-of-dvt-and-pe/
- Simon Noble et al. Long-term psychological consequences of symptomatic pulmonary embolism: a qualitative study BMJ Open 2014 http://bmjopen.bmj.com/content/4/4/e004561.full
- Kahn SR et al. Determinants of health-related quality of life during the 2 years following deep vein thrombosis. J Thromb Haemost 2008; 6: 1105–12.