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Abstract

Venous thromboembolism (VTE) has been associated with reduced quality of life. However, few studies have explored patients’ accounts of its psychological impact. This patient-oriented qualitative study aimed to explore the experiences of individuals with VTE to better understand its psychological impact and identify strategies to support patient well-being. We conducted semi-structured interviews with 11 individuals diagnosed with VTE. Data were analyzed using reflexive thematic analysis. Most participants described significant emotional and psychological challenges, including anxiety about recurrence and uncertainty around the cause and management of their condition. The use of anticoagulants often required lifestyle changes, influenced by concerns about bleeding. While early care was generally described as reassuring, many participants felt unsupported after discharge. For some, the end of acute treatment marked the beginning of new emotional struggles. Participants emphasized the need for care that continues beyond the acute phase and includes mental health support. These findings highlight the need for patient-centered VTE care that addresses both physical and psychological needs throughout the care journey.

Keywords

venous thromboembolism qualitative research mental health patient experience patient-centered care

Introduction

Venous thromboembolism (VTE) includes deep vein thrombosis (DVT) and pulmonary embolism (PE).¹ We define DVT as a blood clot forming in the deep veins, most often in the leg, and PE as a clot that travels through the veins to block blood flow in the lungs.² Risk factors for VTE include active cancer, surgery, trauma, inflammatory diseases, and clotting disorders. However, around half of VTE incidents have no known risk factor.³ Management typically involves anticoagulants, prescribed for durations ranging from three months to indefinitely, depending on individual circumstances. The risk of recurrence depends on individual risk factors.^3,4

For VTE patients, daily anticoagulants, and in select cases, compression stockings and regular mobility exercises are required.^5,6 Studies show VTE decreases quality of life (QoL),^7–9 and while self-reported QoL improves over time,⁷ it rarely returns to pre-VTE levels.^8,9 Additionally, VTE increases the risk of mental health issues, such as depression and anxiety,^10,11 and psychological distress and psychotropic drug use.^12,13

Most VTE studies focus on quantitative methods to evaluate clinical outcomes, often overlooking patients’ narratives about their diagnosis and its impact on their life. Improving VTE care requires a person-centered approach that integrates patients’ values and preferences, promotes physical and emotional well-being, and supports shared decision-making.^14–16 Analyzing patients’ journeys is central for improving care and identifying perceived gaps and unmet needs in VTE care. We present an analysis of patients’ lived and living experience with VTE, whereby we aimed to (1) explore the experiences of individuals with VTE to better understand its psychological impact, and (2) identify strategies to better support patients’ well-being throughout their VTE journeys.

Methods

To ensure research transparency and reduce the risk of incomplete data reporting, we were guided by the recommendations of the Consolidated criteria for reporting qualitative research (COREQ)¹⁷ in reporting this study (see Supplementary Material).

Study Design

We used semi-structured individual interviews. The interview guide was co-designed by clinicians, researchers, and a patient-partner. The larger project from which this study stems, aimed to describe patients’ experiences with their VTE clinical pathway and explore their perspectives on gaps and strategies to improve care processes.

Aligned with the Canadian Strategy for Patient-Oriented Research, we prioritized meaningful patient collaboration.¹⁸ The patient-partner was a co-investigator, contributed to the study design, methods, interview guide development, and theme refinement through active participation.

Researcher Characteristics and Reflexivity

The research team included non-clinician researchers, two clinician researchers who work in thrombosis and anticoagulation management, and a patient-partner with lived experience; all except one team member are female. We acknowledge that our biases and interpretative lenses may have shaped data collection and analysis; for example, clinician-researchers may have focused more on clinical aspects of the VTE journey. However, we took steps to mitigate these biases through reflective discussion. A PhD-trained research assistant who was not involved in clinical care was the primary interviewer. An experienced researcher and the study lead, who is also a clinician, attended all interviews; no participants were under this researcher's care at the time. While interviewing people who are aware of a clinician's role may help increase rapport,¹⁹ to minimize bias, participants were informed that the researcher was acting as in a research capacity only, and that their participation would not provide personal or clinical benefits. Data analysis was led by a PhD-trained researcher with no prior connection to participants or access to clinical data.

Study Setting and Context

This study was conducted in a Canadian province where healthcare delivery is the responsibility of one provincial health authority organized into five health zones with the two eastern zones covering nearly 60% of the population. Diagnosis and management of VTE varies across the province with care provided through acute care facilities, emergency departments, urgent care clinics, and primary and specialist care providers. At the time of data collection, an outpatient Thrombosis Service provided integrated care for some individuals with VTE in two of the five health zones. The Thrombosis Service operated from 2017 to 2024 and offered collaborative care by physicians and pharmacists, and included specialized clinics for acute VTE, perioperative management, and long-term anticoagulation. While the study was not designed to specifically investigate the Thrombosis Service, it is acknowledged that some participants might have received care via the Thrombosis Service.

Sampling Strategy

Participants were purposively recruited across the province using a recruitment poster distributed via bulletin boards, social media, and organizational partner email listservs. All participants were offered a $25 gift card as a token of appreciation for their time. Inclusion criteria were: (1) self-reported history of VTE for which they received treatment; (2) aged 18 or older; (3) community-dwelling; (4) residing within the province; and (5) able to read and speak English. This approach sought diverse VTE experiences to enrich the understanding of patient journeys and highlight opportunities to improve care.

Data Collection

Participants chose their preferred method of participation (phone, video conference, or in-person) and indicated support needs. Individuals who agreed to participate received a consent form prior to the interview.

Primary data were collected through in-person, telephone, and virtual interviews via WebEx from August to September 2024. The interviews, conducted using a semi-structured interview guide (see Supplementary Material), lasted 15 to 45 min. Interviews were digitally recorded and transcribed. Two members of the team independently reviewed the transcripts for accuracy and removed all potentially identifying information such as locations, dates, community references, or names. Each transcript was assigned an ID used in reporting findings.

Data Analysis

Data were analyzed using reflexive thematic analysis (RTA), which included an inductive, organic, and iterative approach to coding and theme development.²⁰ Two team members independently read all transcripts, developed initial codes using Atlas.ti Web (version 9.10.0),²¹ and grouped these into preliminary themes. Preliminary codes and themes were then presented to the larger team and discussed at length; disagreements were resolved through team discussion and supported by a reflexive approach to understanding team members’ underlying assumptions and alternative interpretations. The final set of themes was then developed as interpretative narratives around central concepts, reflecting patterned meaning. Consistent with an RTA approach, data collection continued until we reached analytic sufficiency.²⁰

Our analysis was guided by a subtle realism ontology,²² acknowledging that research is shaped by subjective perceptions and observations. This approach views reality not as an absolute, but through individuals’ experiences, recognizing the coexistence of subjective viewpoints and objective phenomena.^22,23 Our epistemological framework was informed by social constructionism and pragmatism. Social constructionism recognizes that our understanding of the world is shaped by social contexts and collective experiences,²⁴ while pragmatism focuses on how knowledge can address real problems and contribute to action.²⁵ This combined approach, allowed us to explore how individuals experience VTE subjectively, while acknowledging that these experiences are shaped by broader social contexts and situated within real-world healthcare systems and practices. In completing this analysis, we were primarily interested in understanding the psychological impact of VTE and identifying key areas where support could be improved throughout the VTE journey.

Findings

Twelve participants were scheduled for interviews; one withdrew prior to the interview. Eleven individuals completed interviews: one in-person, eight via telephone, and two online. All resided within the province. Information about care from the Thrombosis Service was not systematically collected; however, some participants noted receiving care from the Thrombosis Service as part of their VTE care journey.

Participant characteristics are summarized in Table 1. The sample included seven women and four men; most had a family doctor. All but two were from the province's largest health zone; one was from a central region, and another from a rural eastern region. Health zone details are excluded from Table 1 to maintain confidentiality. Participants’ VTE events (or the most recent event for those with recurrence) were self-reported as having occurred between 2012 and 2024. Participants are identified by ID, gender, and age group throughout the text.

Table 1.

Self-Identified Characteristics of the Participants.

Age Group (years)	Gender	Family Doctor or Nurse Practitioner
30 to <50	Men = 2; women = 2	Yes = 3; no = 1
50 to <70	Men = 2; women = 3	Yes = 4; no = 1
70+	Women = 2	Yes = 1; no = 1

We report four themes, outlined in Table 2 and illustrated with key quotations. Findings suggest the psychological impact of VTE spans the clinical pathway and extends into life post-VTE.

Table 2.

Thematic Structure and Additional Illustrative Quotations.

Themes	Participant Quotations
Theme 1. Emotional strain and uncertainty in the VTE diagnosis journey	I went to emerge, and I was told it was not urgent, and I would have to wait in the [waiting] room, and that could take like a day [to be seen]. (P11, woman, 30-50 years) I just wasn’t taken seriously given my age at the time and not having any real risk factors for [a blood clot]. (P04, woman, 30-50 years) You know, it's blood clots. Why do I have to wait? This could be potentially serious. So, why couldn’t they just put me in a stall and keep monitoring me or do something, instead of making me wait in the waiting room? Yeah, you know, like, of course I was tired, of course I was anxious, of course I didn’t understand. (P08, man, 50-70 years) I don’t think they stress how dangerous it is sometimes, you know, for doing certain things or whatnot. [The doctor] was good and explained to me in medical terms. But the problem was, [those terms] would go right over my head. (P07, woman, 70+ years)
Theme 2. Adapting to life with VTE: emotional stress, lifestyle adjustments, and the search for clarity	Subtheme: Confidence through information, frustration in the unknown Just the fact that they gave me all these Care Sheets after they actually gave me [enoxaparin] injections, and they gave me a disposal container, and taught me how to inject them and everything. So that was phenomenal. I say that would be the most important part [of the care received] for me, because if you’ve never given an injection before, [it's] nerve-wracking, having to do that for yourself. (P04, woman, 30-50 years) Not enough information was given to me at all. So, I have tried to continue living my life the way I did prior to this DVT, but you hear horror stories of, you know, somebody's on a blood thinner and they had too much to drink, and they slipped and fell and hit their head, and they’re gone within a few hours. […]. And when you hear these types of stories, I mean, I don’t know the validity of all of them or anything, but it's still very scary to me. (P11, woman, 30-50 years) They said that I was probably in the 50th percentile that they don’t know why you get blood clots. But it is interesting because I did do some reading about it, and it said sometimes you can have cancer if you have blood clots. (P09, woman, 70+ years) It’d be interesting to know where the blood clots occurred, other than, you know, there's pulmonary ones, some in the lungs, and maybe a small thing in the heart. (P01, man, 50-70 years) I did inquire a little bit about if there was any tests we could do to try to determine […] what caused it. (P03, man, 30-50 years) Subtheme: The physical and emotional challenges of life with VTE Your energy is not the same for months and months afterward. And, yeah, that whole disabled role thing is, is certainly something nobody ever talks about. It's not talked about a lot, anyways, and there's not a lot of support around that, I wouldn’t say. (P05, woman, 50-70 years) My understanding is, for women my age, taking [rivaroxaban] could have a huge impact on menstrual cycles, and that's what happened. I ended up being on a cycle for like two and a half weeks instead of four days. So that was quite alarming. (P11, woman, 30-50 years)
Theme 3. The life-threatening nature of VTE leads to fear and hypervigilance	A friend of mine didn’t have any warning signs and was rushed to emergency. She was getting in her car and just dropped dead on the ground. […] that could have very easily have been me. (P10, woman, 50-70 years) [The doctor] said, here's the probability of mortality. You know, you could go on the blood thinner, your probability of mortality was X, and probability of mortality if you went off the blood thinner was Y, and Y was greater than X. So, I decided the blood thinner was better than the other options. (P01, man, 50-70 years) I went to emerge two or three times because all this bruising was really freaking me out. (P08, man, 50-70 years) I have asked for another ultrasound on that leg; I have no idea if I still have a blood clot or if it's dissolved. I don’t know if I have some of the aftereffects of that of pain in the left leg. (P11, woman, 30-50 years)
Theme 4. The need for support systems after the acute care process	Subtheme: Comforted by acute care support, feeling isolated afterward I was really pleased with how quickly everything moved. I was triaged quickly and assessed very quickly. It's very timely manner that I was sent to see the haematologist and had excellent follow-up there. (P05, woman, 50-70 years) I did enjoy the conversations with internal medicine. I think I spoke to a resident at one point, and then the head of the department or something came down as well. They made sure I had a pretty good understanding of what was going on. (P03, man, 30-50 years) I think I had plenty of opportunities to ask questions, and those answers [were] to my satisfaction. I probably chatted more with my mom, so it wasn’t necessarily as much of healthcare professional interactions outside of sort of familial interactions. (P02, man, 30-50 years) It's been a month—knocking wood—[it] hasn’t happened. But that's the one thing I find is: okay, what do I do next? Should I be seeing that doctor every so often for a check-up? Or what should I be doing? That's what I don’t know. (P07, woman, 70+ years) Subtheme: The need for mental health support to address the emotional toll of VTE I didn’t get any extra referrals to physiotherapy or mental health. [I had to handle the] mental health thing myself, I had to do it on my own, like I sought out a public health nurse. (P08, man, 50-70 years) Even to have people like me, who have come through this and survived, come in and talk to some people say, “Listen, it's going to be okay, you’re gonna be fine, you’re in great hands, they know what they’re doing.” (P10, woman, 50-70 years)

Abbreviations: VTE, venous thromboembolism; DVT, deep vein thrombosis.

Theme 1. Emotional Strain and Uncertainty in the VTE Diagnosis Journey

Participants described evolving emotional responses throughout their VTE diagnosis journey. Many reported frustration, often due to healthcare providers dismissing initial symptoms based on assumptions about age or risk factors (Table 2; P11). Younger women felt that their concerns were unacknowledged, perhaps due to their perceived low risk for VTE (Table 2; P04).

People with a history of VTE were aware of its potential fatality and reported intensified distress, especially when they felt not prioritized by the system (Table 2; P08). Feelings of dismissal extended beyond clinical encounters; some participants felt disregarded by family.

I talked to my son on a Saturday; this was on a Wednesday [when the leg pain started]. By Saturday, it was still worse, and I said to him, it felt heavy, my leg felt heavy. So, I talked to my son, he said, “Mom, everybody has problems” So, okay, I’m paranoid. (P07, woman, 70+ years)

This shows how family dynamics may influence help-seeking behaviors and delay medical attention. This is of particular importance in older adults, whose symptoms may be overlooked due to age-related perceptions.

After diagnosis, many patients shifted from frustration to shock and stress. The delivery of the diagnosis often intensified emotional unrest. Some respondents expressed that the language used by clinicians added confusion, and the seriousness of VTE was not always clearly communicated (Table 2; P07). Ineffective communication, particularly for older adults, may cause them to feel overwhelmed and marginalized. For some, there may be a gap between clinicians’ communication style and the patient's ability to understand complex health information.

Theme 2. Adapting to Life With VTE: Emotional Stress, Lifestyle Adjustments, and the Search for Clarity

Participants described how life with VTE required adjustments involving physical changes, emotional responses, and living with unanswered questions. The subthemes map the adaptation process, showing how participants moved between reassurance and distress, shaped by access to knowledge, resilience, and healthcare interactions.

Confidence Through Information, Frustration in the Unknown

Clear, accessible information helped reduce uncertainty and, in some cases, increased patients’ confidence in managing their health and making informed decisions (Table 2; P04). Contrastingly, participants who felt poorly informed expressed concern and anxiety due to insufficient understanding of blood thinners risks and management (Table 2; P11).

While increased knowledge promoted independence and reduced uncertainty, many participants still desire to understand the specific cause of their VTE. These feelings persisted after the initial diagnosis and treatment, with some questioning whether genetic factors or other causes (see Table 2; P09) contributed to their VTE.

What's interesting is I have a mother with factor V, my sister has factor V. My mother and my brother had both the protein C. I was tested in 2002. I have all the documentation, and my test showed negative. (P11, woman, 30-50 years)

The lack of clear medical explanation caused confusion and curiosity, leading participants to doubts their diagnosis and a desire for further investigation into possible underlying issues (Table 2; P01 and P03). This uncertainty affected their ability to move on and left them with a sense of unresolved experience. Without clearer explanations, the psychological impact of VTE may persist after the physical event.

The Physical and Emotional Challenges of Life With VTE

Adjusting to life with VTE involved navigating complex physical and emotional changes, with participants sharing experiences of physical limitations and emotional stress (Table 2; P05). Some mentioned challenges in managing anticoagulant therapy, often related to the side effects. Younger, active individuals experienced a high psychological burden, with constant fear of recurrence or therapy-related harm contributing to ongoing stress.

My fear is I’m on blood thinners. So, I’m very anxious about falling and hitting my head. I’m very athletic. I love fitness. I love sport. It's changed my life significantly. I’m more nervous and anxious of getting hurt because I am on blood thinners. (P11, woman, 30-50 years)

A few participants noted a lack of adequate follow-up or information about life with VTE, highlighting clinicians’ focus on the immediate physical effects, with less attention given to the practical consequences and lifestyle impact (Table 2; P11).

There's no follow up about [the] functional impact of having DVT and PE. (P05, woman, 50-70 years)

Theme 3. The Life-Threatening Nature of VTE Leads to Fear and Hypervigilance

A critical moment was realizing the life-threatening nature of VTE. For some, this understanding occurred shortly after the event through conversations with healthcare professionals, while for others, it arose from learning about others’ tragic experiences (Table 2; P10). These stories caused participants to reflect on their own vulnerability and mortality.

I didn’t know how dangerous the condition I had was. I knew there was something wrong with my leg, but I did not know it was a blood [clot], […] I didn’t realise the severity of it. (P07, woman, 70+ years)

For some participants, the potential consequences of VTE, including the risk of mortality, influenced their treatment decisions, particularly about anticoagulation medications (Table 2; P01).

The realization of VTE fatality triggered hypervigilance, leading to constant worry and anxiety about recurrence or long-term complications. When experiencing sudden or unusual symptoms, many participants reported heightened vigilance and fear, with some seeking further care to understand their current health status (Table 2; P08 and P11).

Theme 4. The Need for Support Systems After the Acute Care Process

The emotional trauma associated with medical care was often overlooked due to emphasis on physical recovery; many participants felt vulnerable, fearful, and uncertain. These experiences emphasize the need for strong support systems postcare to help patients manage these emotional challenges. In this context, participants reflected on how their well-being was influenced by the perceived support, or lack thereof, from healthcare professionals and family.

Comforted by Acute Care Support, Feeling Isolated Afterward

Patients appreciated the support and care from healthcare professionals during acute treatment (Table 2; P05). Some appreciated the opportunity to engage in shared decision-making and valued the interactions with medical staff, especially when these interactions helped them to better understand their situation (Table 2; P03). For others, family members provided significant emotional support, helping to ease feelings of fear and confusion, and process their VTE experience (Table 2; P02).

Participants emphasized the importance of feeling supported throughout their care experience. Some reported that postcare support was insufficient or absent. A few participants felt isolated after the acute phase of care, once initial medical interventions had been completed.

I guess once you’re on the medication, you’re on it, but you know, you feel kind of left out in the cold. (P09, woman, 70+ years)

The absence of clear post-treatment guidance contributed to feelings of helplessness and anxiety. Participants often had to manage recovery alone, actively seeking answers to basic questions about their health, such as which activities were safe (Table 2; P07). These accounts suggest a gap in support after the acute phase of care, highlighting the need for more comprehensive guidance on long-term health management.

I had to insist on seeing a nurse practitioner that was in the same clinic, just to ask questions. Can I exercise? What is it I can and can’t do? What are my options for birth control? I had no idea, and no one had [told me]. It was more or less “You have a DVT.” (P11, woman, 30-50 years)

The Need for Mental Health Support to Address the Emotional Toll of VTE

Several participants stressed the need for mental health support during the immediate treatment and afterward. Some sought help on their own (Table 2; P08), highlighting a gap in care where psychological distress is often overlooked.

I think that was the only time I reached out to a counsellor and spoke to a counsellor a couple of times, because it was quite overwhelming. And, you know, I was fortunate enough, […] that I could access that easily. Just incredibly overwhelming. (P05, woman, 50-70 years)

Participants suggested that counseling could have helped them process the trauma of a potentially life-threatening event. Others suggested that peer support, where individuals with similar experiences offer reassurance and encouragement, could be beneficial (Table 2; P10). These accounts indicate the importance of integrating mental health services into VTE care to address the enduring psychological burden of diagnosis and the challenges of treatment and recovery.

Discussion

In this study, we explored the psychological impact of VTE and identified strategies to better support patients’ well-being. Our findings extend existing qualitative research by showing how emotional and psychological challenges evolve across the VTE care journey and are shaped by patients’ interactions with healthcare systems. Participants’ VTE events ranged from relatively recent events to cases that had occurred years earlier, allowing us to capture the immediate and longer-term psychological adjustments that follow the acute phase of VTE. Individuals with VTE experience complex emotional and psychological challenges throughout their healthcare journey. Notably, unlike other conditions such as cancer, there is currently no formal survivorship care framework for VTE. While cancer survivorship frameworks provide structured guidance on surveillance and management of psychosocial effects,^26,27 VTE care typically focuses on acute treatment and anticoagulation, with limited attention to long-term psychological support.²⁸ Recognizing the absence of a VTE-specific survivorship framework highlights the importance of understanding patients’ lived experiences throughout the care journey and to identify opportunities to strengthen psychological support within VTE care.

Our findings suggest age plays a key role in shaping these experiences. Previous research shows that younger individuals report higher emotional impact and a desire for control over their treatment and often feel isolated due to peers’ lack of understanding. Contrastingly, older adults may see the event as reinforcing existing feelings of dependency.^29,30 Consistent with the literature, younger participants in our study reported feeling dismissed due to assumptions about their low risk, contributing to a sense of not being taken seriously. Older adults reported that their symptoms were sometimes misattributed to normal aging, potentially delaying diagnosis and intensifying emotional distress. These patterns suggest that age-related assumptions may inadvertently shape the clinical response and patients’ self-perceptions, influencing how individuals make sense of and adapt to their diagnosis. These findings also emphasize the need for age-sensitive approaches that acknowledge how assumptions can affect clinical decision-making and psychological adjustment.

Perceived poor communication from healthcare providers considerably contributed to participants’ distress. Unclear or untimely information increased anxiety and confusion. This concurs with previous research showing that poor communication, particularly in the acute phase of care, can leave patients feeling isolated and uninformed.^31–33 The shock of diagnosis and ongoing uncertainty may result in long-term psychological distress.³⁴ We found that inadequate communication was a consistent driver of anxiety during acute care, follow-up, and long-term treatment. These communication gaps appeared to increase uncertainty and affect emotional processing, suggesting that clear and timely information is important not only for patients to better understand their treatment and prognosis but also for their psychological adjustment. To mitigate this, clinicians could use more accessible language, provide realistic prognostic information, and offer structured follow-up support. A patient-centered approach that promotes empathetic engagement may improve patient–provider relationships and health outcomes.

A key finding was the need to improve post-diagnosis care through structured follow-up that includes physical and psychological support. Many participants felt abandoned after discharge from an acute care setting or service, left to self-manage symptoms and anxiety; an issue described in previous studies.^29,35 This lack of continuity increased emotional strain and affected recovery, particularly for younger individuals adapting to lifestyle changes alongside long-term treatment. Consistent with prior research, ongoing fear of recurrence and persistent physical symptoms contributed to uncertainty and avoidance behaviors.^31,36 These findings highlight that recovery from VTE is an ongoing psychological process, not just a clinical outcome. Importantly, our participants reflect a span of time since their self-reported VTE events from months to over a decade, indicating that the psychological and behavioral effects can persist for years beyond the initial diagnosis. Clear long-term guidance on medication management, symptom monitoring, and accessible psychological support, may reduce distress and increase a sense of control. As seen in antiphospholipid syndrome research, fragmented care and poor communication between services may place unnecessary burden on patients navigating complex post-treatment needs.³⁷ Multidisciplinary models that include mental health services may be better equipped to meet these challenges.

Anticoagulant therapy, while essential, often triggered significant anxiety and lifestyle disruption. Consistent with our findings, other studies have described fear of bleeding or recurrence.^29,31,34 Younger, active individuals often modify behaviors to avoid injury or exertion, contributing to loss of identity.³⁴ While patients often develop medication routines, they are rarely encouraged to discuss the emotional impacts of treatment with their clinicians.³⁸ The literature suggests that clinicians’ may hesitate to raise emotional concerns for fear of causing or increasing distress.^31,36,39 However, this silence may intensify patients’ uncertainty and emotional burden. These findings suggest that integrating brief psychosocial check-ins during anticoagulation management could help normalize discussion of emotional concerns and reduce the sense of isolation many participants described.

Our findings underscore the urgent need to integrate mental health support into standard VTE care. Clinicians typically focus on biomedical management, and discussions around anxiety and long-term psychological adjustment may fall outside their perceived role. This gap highlights the value of collaborative care models that involve mental health professionals and peer support. Participants viewed peer groups as a potential source of validation and reassurance. Despite access to thrombosis services for some participants, many described managing their emotional distress privately, without formal support. This lack of formal emotional support is consistent with other studies showing that patients wish for comprehensive care that addresses their mental health and well-being.³¹ These findings reinforce the importance of recognizing psychological recovery as an integral part of VTE management, rather than an optional component of care. Incorporating structured psychological support, including counseling and peer support groups, could address these unmet needs and promote patient-centered care.

This study contributes to the growing body of literature on patients’ experiences with VTE by providing deeper insight into its psychological impact across the care journey. By situating these experiences within a real-world healthcare system, our findings add to the understanding of how service structures, communication practices, and professional roles shape the emotional trajectory of recovery. Our findings suggest several practical recommendations, including the need for clearer patient communication, structured follow-up beyond the acute phase, and integration of mental health and peer support within VTE care services to improve recovery and well-being.

A notable strength is the inclusion of a patient-partner with lived experience as co-investigator, which helped to ensure the relevance, sensitivity, and contextual appropriateness of the study design and interpretation of findings. Additional strengths include diversity in participants’ age and gender, and strategies to enhance trustworthiness, such as collaborative theme refinement and transparent coding within the RTA approach.

Limitations

Limitations include a relatively homogeneous sample in terms of social background. All reported English as their first language, and some may have had access to a specialized service; however, exploration of specialized service access was not an objective of this study. Although data on gender was collected, information on gender identity or race was not. As a result, the findings may disproportionately reflect the experiences of individuals with greater access to healthcare and systemic privilege. Underrepresented or underserved communities may face additional challenges not captured in this study. Future studies should prioritize inclusion of racialized, gender-diverse, and underserved populations to better capture the psychological and structural challenges. Additionally, VTE diagnoses were self-reported, and we did not access clinical records. Consequently, detailed information on therapeutic modalities, diagnostic distinctions (eg, DVT vs PE), specifics of care locations, or clinical severity was unavailable. Furthermore, we did not ascertain participants’ access to specialized services like the Thrombosis Service. Therefore, it is not possible to explore how treatment variation in treatment pathways influenced psychological responses or support needs. Future research could examine differential impacts of treatment modalities such as long-term anticoagulation or PE-specific care to illuminate nuanced patient needs.

Conclusion

This study demonstrates the significant psychological impact of VTE and the need for comprehensive follow-up care that acknowledges and addresses the emotional and psychological challenges faced by patients throughout their healthcare journey. Key areas for improvement include better communication, personalized care that includes mental health support, and clearer information regarding the cause and management of VTE. Providing accessible information and emotional support is crucial to reducing uncertainty, easing anxiety, and improving patient well-being.

Supplemental Material

sj-docx-1-jpx-10.1177_23743735261415656 - Supplemental material for “Incredibly Overwhelming”: A Reflexive Thematic Analysis of the Psychological Impact of Venous Thromboembolism—A Patient-Oriented Study

Supplemental material, sj-docx-1-jpx-10.1177_23743735261415656 for “Incredibly Overwhelming”: A Reflexive Thematic Analysis of the Psychological Impact of Venous Thromboembolism—A Patient-Oriented Study by Gabriela Carrillo-Balam, Tiffany Lee, Thaneswary Rajanderan, Theresa Mackenzie, Kwadwo Osei Bonsu and Stephanie Young in Journal of Patient Experience

Supplemental Material

sj-docx-2-jpx-10.1177_23743735261415656 - Supplemental material for “Incredibly Overwhelming”: A Reflexive Thematic Analysis of the Psychological Impact of Venous Thromboembolism—A Patient-Oriented Study

Supplemental material, sj-docx-2-jpx-10.1177_23743735261415656 for “Incredibly Overwhelming”: A Reflexive Thematic Analysis of the Psychological Impact of Venous Thromboembolism—A Patient-Oriented Study by Gabriela Carrillo-Balam, Tiffany Lee, Thaneswary Rajanderan, Theresa Mackenzie, Kwadwo Osei Bonsu and Stephanie Young in Journal of Patient Experience

Footnotes

Acknowledgments

The authors thank all the participants of this study for their time and sharing their personal experiences.

Author Contributions

Gabriela Carrillo-Balam: conceptualization, funding acquisition, methodology, data curation, formal analysis, and writing—original draft. Tiffany Lee: conceptualization, funding acquisition, methodology, and writing—reviewing and editing. Thaneswary Rajanderan: data curation, investigation, and writing—reviewing and editing. Theresa Mackenzie: conceptualization, funding acquisition, methodology, and writing—reviewing and editing. Kwadwo Osei Bonsu: conceptualization, funding acquisition, methodology, and writing—reviewing and editing. Stephanie Young: conceptualization, funding acquisition, methodology, project administration, and writing—reviewing and editing.

Consent to Participate

All participants received a participant information sheet outlining the purpose of the study, what participation entailed, their right to withdraw at any time, and data protection procedures. Verbal informed consent was obtained from all participants prior to participation, in accordance with the approval granted by the research ethics board.

Data Availability

Data is not available due to participant consent restrictions.

Declaration of Conflicting Interests

Stephanie Young reports receiving funding grants from Sanofi-Aventis Canada Inc. and Bayer Canada. Tiffany Lee reports receiving funding grants from Shoppers Drug Mart. Kwadwo Osei Bonsu reports receiving funding grants from Sanofi-Aventis Canada Inc. All other authors declare that they have no competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Ethical Considerations

This study was approved by the Newfoundland and Labrador Health Research Ethics Board (approval #2023.164) on September 28, 2023.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this project was provided by the NL SUPPORT/Quality of Care NL Health Professional-led Research award. The funders have no role in the design, data collection, analysis, interpretation, and writing of the manuscript.

Supplemental Material

Supplemental material for this article is available online.

ORCID iDs

Gabriela Carrillo-Balam

Tiffany Lee

References

Canadian Venous Thromboembolism Research Network (CanVECTOR). Venous thromboembolism. https://www.canvector.ca/venous-thromboembolism

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