Emotional Impact of Venous Thromboembolism: A Qualitative Study of Patients’ Journeys

[Abstract]

Background: Venous thromboembolism (VTE) is a relatively common disorder that can greatly affect patients’ quality of life.

Objectives: To understand patients’ perceptions of the transitions of care from the hospital to home and from acute to chronic management, and to gauge the emotional impact of VTE on the patient in that journey.

Method: A total of 17 patients with VTE from across the United States were interviewed via an online bulletin board during the course of a 14-hour window in February 2016. Patients were recruited by an independent market research agency from a nationally representative panel of consumers who pre-enrolled to participate in research studies. Additional patients were referred by staff members at the University of Utah Health Care Thrombosis Service.

Results: Patients reported significant stress, anxiety, and confusion at VTE diagnosis, followed by anxiety and depression in the chronic therapy stage, particularly with persistent fear of disease recurrence. Patients who had an explicit treatment plan in place reported greater comfort than those without such a plan in making the care transitions from the hospital to home and from the acute to the chronic phase of VTE management.

Conclusions: Patients experience emotional harm associated with VTE that can be mitigated by effective transition of care plans. Healthcare providers should standardize early information about VTE complications, treatment, and self-management strategies with patients to mitigate the emotional sequelae of VTE, and be prepared to facilitate emotional counseling and support services as needed.

Venous thromboembolism (VTE) is associated with reduced survival, a high rate of recurrence, poor quality of life, and substantial healthcare costs.^1-4 The incidence rate of VTE is comparable to the incidence of stroke.¹ The Institute of Medicine report Vital Signs: Core Metrics for Health and Health Care Progress highlights the importance of evaluating quality of care by considering the patient’s self-reported care access and well-being.⁵ Improved understanding of the patient journey through the VTE experience in terms of its effects on patients’ emotional well-being may help to improve patients’ understanding of the risk factors for VTE and enhance patients’ self-management strategies that may mitigate the risk for VTE recurrence and/or the associated complications. This would benefit patients’ personal lives, as well as benefit society as a whole in terms of reduced healthcare costs.

A challenge in the management of VTE is that it can occur with no warning, it can be life-threatening, and may require lifelong medication. Therefore, the potential for patients having high levels of psychological distress, including anxiety or depression, is high.⁶ The choice of a VTE treatment strategy may also impose psychological stress, because the traditional anticoagulant medication—warfarin—requires dietary restrictions and frequent laboratory testing, whereas direct oral anticoagulants may simplify VTE management.⁷ In addition to the impact of the initial VTE event and its management on psychological stress, limited evidence also suggests that a patient’s mental health (eg, loneliness, depression) may independently elevate the risk for VTE recurrence.⁸

To support quality improvements of VTE education and counseling for patients, we conducted qualitative interviews with patients who had VTE across the United States to gauge the extent of impact that a VTE diagnosis and the treatment regimens may have on patients’ emotional well-being.

Methods

The study protocol was reviewed by the University of Utah’s Institutional Review Board before data collection was initiated. All participants provided informed consent before being interviewed.

Patient Population

The study sample comprised patients who have had VTE and who were recruited by an independent market research agency (Hall & Partners, New York, NY) from a nationally representative panel of consumers who pre-enrolled to participate in research studies. Additional patients were referred by staff members at the University of Utah Health Care Thrombosis Service. Eligible patients were recruited on a first-come, first-served basis until the predetermined sample size was achieved.

As with all qualitative research, the sample size was restrictive and sufficient to gauge the perceptions of the interviewees only. Patients’ responses to questions were not intended to be generalizable to the groups or populations from which interviewees were selected.

Eligibility criteria included being aged >18 years and having had pulmonary embolism or deep-vein thrombosis that was not temporally associated with a surgical procedure or cancer. Patients also had to have VTE events ≥3 months before the interview so that they would be able to elucidate well their journey from diagnosis through the minimum recommended duration of anticoagulation therapy.⁹

Recruiting strategies aimed to include a mix of patients receiving warfarin therapy, direct oral anticoagulant therapy, or patients not currently taking any VTE medication, as well as a variety of ethnicities, employment status, household income, insurance status, and geographic location. Health professionals were excluded from the study.

Interview Procedure

This qualitative study used an online bulletin board discussion, where the moderator posted written questions to the group of patients to capture a snapshot of their experiences with VTE across the United States, rather than interviewing patients from discrete clinical sites.^10-12 Participants logged on to a website to answer initial and follow-up written questions that took approximately 60 to 90 minutes at a finish time convenient to them during the course of a 14-hour window in February 2016, and participants received an honorarium for their participation.

Patients posted responses to an initial set of 31 questions administered by the moderator in blocks throughout the session, and then participated by posting written responses to follow-up probes posed by the moderator in response. All patients could see the responses posted to the group, which facilitated cross-respondent online discussion. An independent professional market research moderator with direct patient-interviewing experience posed probing follow-up questions. The investigator team observed the interviews online and provided suggestions to the moderator for additional probes.

Thematic Extraction

All online bulletin board text data were downloaded into an Excel spreadsheet containing moderator queries and interviewee responses. The moderator and investigators reviewed all the data, and common themes and observations were extracted. Because of the didactic style of the interviews, it was not necessary to use qualitative research analytic support tools and software (eg, NVivo; QSR International) to facilitate thematic coding.

Results

The study sample comprised 17 respondents; 14 were recruited through the national panel, and 3 were patient advocates referred by the University of Utah Health Care Thrombosis Service staff. The patients’ demographic characteristics, VTE type, and current treatment regimens are shown in the Table.

Table. Demographic Characteristics of Patients with Venous Thromboembolism Interviewed

A VTE diagnosis process causes concern, with the potential for greater anxiety in the emergency department setting. The actual diagnostic tests (ie, ultrasound, d-dimer test, and computed tomography angiography) do not cause physical discomfort, although some emotional concern related to the uncertainty of the cause of VTE symptoms lingers through testing, until the actual diagnosis is made. Uncertainty can be exacerbated by a lack of communication in the diagnostic and emergency settings, such as “I remember being hooked up to a number of machines in an atmosphere of very high stress. I wasn’t told anything for at least 2 hours.”

Emotional Impact of VTE Diagnosis

The diagnosis of VTE can be shocking, because most patients have not heard of VTE before. The few patients who knew about VTE in this study were relieved that the event was not more serious, because they understood that VTE can be deadly. Other emotions surfaced once patients became aware of their VTE diagnoses, including fear, anxiety, and confusion. Patients said they did not know what living with VTE would be like in the future, what treatment would entail, how long they would need to receive treatment, what lifestyle changes or restrictions they would have to make, and wondered about the risk for VTE recurrence. Some examples of patients’ comments are, “I was thinking what I needed to do and felt scared for myself but more so my family. I was afraid, confused, worried, and sad. I had never heard of the condition.” Another patient said, “I was terrified. I had almost died the day before; it was deeply traumatic.” And yet another, “I was angry and confused.”

A diagnosis of VTE is associated with fear when patients become aware of the increased risk for bleeding, bruising, potentially having more clots, and the possibility of death. For some patients, this fear can be restrictive, leading them to scale back their activities to avoid potential complications. For example, “I was worried about getting out and doing the things I love to do. I feared it worsening and possible death or becoming immobile.”

For others, a VTE event provided an opportunity to improve their overall health through diet and exercise, in hope of preventing a future recurrence. As one patient said, “Pulmonary embolism changed me in a couple of ways. I’m really trying to watch my cholesterol levels; I eat healthier foods now because of this. I take even more walks now than I used to, and I did a fair amount of walking a few years ago.”

Patient Education About Medication Therapy

Patients were interested in knowing more about initial medication options, and stated that they were generally provided satisfactory information from their healthcare providers. They desire to know about side effects, long-term effects, safety, efficacy, and how long they will need to take the medication. For the most part, patients felt that their questions were adequately addressed by their healthcare providers. For example, one patient noted, “I asked about side effects, efficacy, and trial results, how long I would need to be on the medication, insurance, pharmaceutical support. I thought that my questions were answered in a way that I felt reassured about taking the medication.”

By contrast, a few patients were unsatisfied with the level of information they received, which resulted in frustration and the need to seek out information on their own. One such example was, “I asked them how it would affect me in the long run. The only answer I got was that they don’t have much research to give me the answer I needed. So I felt like a lab rat, in a way.”

Explicit Transition Plans Reduce Stress and Fear

Having an explicit treatment plan in place helps patients with VTE make the transition from initial treatment to long-term and home-based care, helping them to feel more at ease. The treatment plans covered the transition from the initial treatment phase to a longer-term, maintenance phase, and the transition from a hospital or acute care setting to a home-based, self-care environment. As one patient noted, “I feel okay knowing that’s what they recommend, as long as I have someone to talk to, and I see him for regular checkups to make sure things are going as planned. I wasn’t really afraid; he made me feel very comfortable in the game plan.”

By contrast, patients who felt they were given little information were apprehensive about transitioning to self-care. For example, “I was given little information on self-care regarding my condition. I was not sure what signs and symptom[s] called for going to the emergency department versus my primary care physician….I had a lot of fear about how to care for myself. I did not know what doctor to ask. I often got vague answers when I did ask.”

When the transition of care between physicians or between treatment settings breaks down or does not go smoothly, it is often caused by conflicting approaches and recommendations among healthcare providers. This makes patients feel less confident in their future treatment plan, and distrusting of the medical advice they are receiving. One example was, “My primary care physician seemed to be hands off—‘call the specialist’ or ‘go to the ER [emergency department].’ I felt that I had to put all the pieces together and remind each doctor about the details of my condition as I knew them. Again, I felt like I had to advocate for this to occur.” Another patient said, “I have had no continuity of care at all from my primary care physician. I have confidence in my naturopathic and traditional Chinese medical doctors. No confidence at all in my primary care physician, sadly.” And yet another said, “I had doctors fighting over how to handle my case because it was so unusual; it just was not good behavior.”

Monitoring Can Be Reassuring or Frustrating

Patients are monitored during initial and long-term therapy formally with blood work and international normalized ratio if they are taking warfarin, and informally through conversations with their physicians. Monitoring can help ease stress and concern, because patients feel that the monitoring is part of preventing another VTE event, as can be gleaned in this comment, “I am glad that I am constantly monitored for the VTE. I do not experience any symptoms from the disease or the side effects from the medication.”

However, monitoring can also be a source of frustration and a logistic challenge, especially as time progresses, as expressed by one patient: “I have become frustrated over the years with the monitoring. It’s a necessity, but it gets in the way. If I start a new job, I could lose that job if the company is not flexible.”

Risk for VTE Recurrence

Overall, patients reported that their physicians adequately explained the risk for having another VTE event, as is expressed in this comment, “They told me the chances, percentages, long-term outlook and concerns. They were very good about laying it out for me, I feel confident in the information.”

A few patients would have liked more information to take home for follow-up review on their own. Having the materials on a compact disc or at an accessible website link with information and videos would be viewed as helpful in terms of reviewing the information and having access to it again. Some comments illuminate this issue. “By giving people a link to a website where they would watch a video on this and make it a point to watch it at least once a month,” said one patient. “A website with more resources for us would be nice instead of searching all over for different information,” said another. And, “Put it on a disc to take home and review periodically,” and, “I wish there was a booklet with visual aids and resources for me at the time of initial diagnosis or soon after. I felt that I was left to trust what I found on [Internet] searches.”

Depression and Anxiety

The VTE experience can have a negative emotional impact on patients, with a few patients reporting depression and several more reporting increased anxiety necessitating counseling, as can be seen in the following examples: “I have sought help for stress management, adjustment because of health changes and depression.” “I have anxiety about my heart, calf pain. Having such a severe pulmonary embolism is emotionally hard.” “Every time I get a throb or pain in my leg, I think about it. I have even had an anxiety attack about it.” And, “I became depressed after my initial diagnosis and really thought I was going to die.”

Projective Imagery Conveys VTE Risk

In a projective exercise, participants were asked to describe VTE as an animal and characterize it. The elucidated language reflects the significant effect VTE has on people’s lives. The imagery used to describe VTE consistently resonated themes of danger, power, aggressiveness, and the unexpectedness with which it can recur. For example, “[VTE would] be a lion. It has an aggressive personality and can strike at any time when it hunts others.” “Lion roaming the jungle looking for its next victim. Machiavellian, unrelenting, always around the corner ready to strike, a formidable foe.” “A snake. It is a sneaky animal. Lurking and slithering along waiting for an opportunity to strike. It hides in the creaks and crannies and when you least expect it, it jumps out and bites you.” And, “A bear. A big bear can be dangerous, and you don’t know what to expect out of him if you meet up with one. A big bear could attack. Then again you might come across a small cub who wouldn’t harm you at all. Just like the VTE….He is smart and sneaky, just waiting for you to miss your medication and then he’ll attack.”

Discussion

In this sample of patients who have had VTE, emotional harm such as confusion, fear, anxiety, or depression is prevalent. These results can be mitigated by healthcare provider practices that are dependent on effective education and communication. The imagery of dangerous, powerful, and aggressive animals, such as lions, bears, or snakes, used to describe the condition is emotionally evocative of the fear patients with VTE live under after their diagnosis.

The fear of a future VTE can have a significant effect on patients’ lives from physical and emotional perspectives. Physically, patients take steps to prevent a future VTE, including increased exercise and improved diets, and to prevent putting themselves at an increased risk for bleeding or bruising during treatment with anticoagulant medication. These limitations can be frustrating for patients who were more active before their VTE.

Emotionally, VTE can have significant lingering effects beyond the initial shock, anxiety, and confusion over the diagnosis. A few patients reported depression and anxiety as a result of the VTE, and concern over having a future VTE. Concerns about having VTE recurrence were common among all patients—however, the degree to which they focused on the risk varied. This may provide an opportunity for intervention, with prescreening to determine whether patients are susceptible to depression and anxiety. Such patients may benefit from more proactive assistance for better potential patient outcomes. Identifying and addressing psychological stress may also prove helpful when patients are having difficulty adhering to treatment instructions.

Our findings suggest that patients have positive experiences with VTE medication therapy. Receiving anticoagulant medication can give patients hope that they are taking some control over their VTE, and preventing a recurrence. Patients have relatively high expectations for anticoagulant medications, and expect the medications to prevent future VTEs. Patients accept that they will most likely take anticoagulant medication for the rest of their lives. This can be disheartening for some patients, whereas others pragmatically accept the anticoagulant medication as a necessary step in preventing future VTE events. Ongoing monitoring gives patients some peace of mind that they are being closely watched and are receiving good care, especially in the hospital setting. However, outside of the hospital setting, monitoring can pose logistic challenges and cause frustration, especially in the long-term.

Regarding transitions of care among healthcare providers and among healthcare settings, as well as transitions to longer-term maintenance therapy, a common theme elucidated is that positive experiences are conditional on effective communication among care providers and with the patient. Patients can be put at ease by knowing how the treatment approach will unfold, and by having a clear picture of what to expect with treatment. Clear communication among healthcare providers helps ensure that the highest quality of care is maintained. When different healthcare providers espouse conflicting treatment approaches, or patient information is not taken into consideration, there is a disruption in the transition of care. This can cause stress and anxiety for patients, because they feel that their best interests are not being taken into account, which can result in skepticism of the advice received from their healthcare providers and induce further psychological stress.

Practice Implications

This study indicates that healthcare providers need to engage patients more directly about the mental health implications of VTE disease. In addition to educating patients directly about the functional aspects of the disease, healthcare providers should be concerned about the potential emotional sequelae of VTE, identify patients at risk for emotional distress, and be prepared to facilitate counseling and support services as needed. Evidence suggests that structured teaching and self-management programs for patients receiving oral anticoagulant therapy can be beneficial for quality of life,^13,14 and our research suggests that incorporating mental health prevention strategies into ongoing patient education programs may also be beneficial.

Moreover, throughout the education and counseling process, providers should be aware that the mental state of their patients may be impairing the patients’ abilities to adequately digest and internalize the information presented, especially in the early stages of diagnosis. Thus, ongoing patient access to VTE educational materials is a potential area of unmet need.

Some patients suggested that having VTE information available on a website, on a compact disc, or in a booklet to review in their own time, and over time, would have helped them better understand the condition and treatments, as well as the ongoing decisions they need to make regarding medication choices and lifestyle changes.

Conclusion

This research highlights the emotional impact that VTE can have on patients. Emotional “harms” should be considered throughout any patient healthcare journey. Explicit proactive treatment plans and effective communication among healthcare providers may mitigate some of these emotional harms. Effective explanations of a patient’s condition, medications, and treatment approach, as well as consistent communication among healthcare providers, may facilitate more positive transitions of care.

This qualitative research was limited in scope, and the prevalence and correlates of emotional distress will be evaluated and validated in a national survey to empirically establish grounded targets for intervention and change in practice.

Source of Funding

This research was supported by a grant from Pfizer Independent Grants for Learning & Change, Bristol-Myers Squibb Independent Medical Education, and The Joint Commission. The grant sponsor had no impact on the study design, data collection, or interpretation.

Author Disclosure Statement

Dr Feehan has received consulting funding from Pfizer. Mr Walsh, Dr Munger, Dr Fleming, Dr Johnson, and Dr Witt have no conflicts of interest to report.

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