The Dalì study

Presented at the International Society on Thrombosis and Haemostasis  2026 Congress in Paris and published simultaneously in the Journal of Thrombosis and Haemostasis, the Dalì study[1], conducted by Dr. Daniel Steiner and the Austrian research group of Prof. Cihan Ay (Medical University of Vienna), offers a qualitative perspective on an issue which is often overlooked: how patients with unprovoked venous thromboembolism (VTE) experience their disease and how this experience influences their relationship with anticoagulant therapy.

A previous Dutch qualitative study[2] highlighted mixed feelings regarding long-term anticoagulant therapy. While some patients reported that continuing treatment provided a sense of security and protection, others expressed reluctance to take medication long term and preferred to minimize medication use whenever possible. These factors may influence adherence to anticoagulant treatment.

In the qualitative Dalì study[1], the authors conducted semi-structured interviews with 22 patients with unprovoked VTE receiving long-term anticoagulant therapy, and performed a thematic analysis. They explored illness perception, attitudes toward anticoagulant therapy, and the impact on daily life. The name Dalì is an acronym derived from the study title (Disease perception of patients with unprovoked venous thromboembolism and their Attitude towards anti-coaguLatIon). In addition, as part of an exploratory art-based activity, patients were invited to express their thoughts and feelings about their disease and management using drawings and coloured pencils.

Regarding disease perception (also referred to as the “subjective theory of illness”), patients proposed several possible explanations for their unprovoked VTE: psychological stress, excessive physical exertion, lifestyle, family history, and specific events that had occurred before the thrombotic episode. The thematic analysis identified three main themes: (1) VTE is experienced as a threatening, life-changing event; (2) patients report feelings of uncertainty and difficulty understanding the disease; and (3) patients have an ambivalent attitude toward anticoagulant therapy and follow-up.

Even when no identifiable clinical cause of thrombosis exists, patients develop personal explanations for the origin of their disease. Illness perception may influence how patients evaluate the risks and benefits of anticoagulant therapy and, consequently, their attitude toward treatment. For this reason, these beliefs should be explored and discussed openly throughout the course of care to promote truly shared decision-making process between physicians and patients. Effective communication may help improve treatment adherence and, ultimately, the quality of care.

Making Sense of Unprovoked VTE: A Psychological Interpretation of the Dalì Study

Christian Borg Xuereb
Health Psychologist & Associate Professor, Department of Gerontology and Dementia Studies, Faculty for Social Wellbeing, University of Malta

The findings of the Dalì study can also be interpreted in light of Leventhal’s Common-Sense Model of Self-Regulation, a psychological framework describing how individuals seek to understand and cope with illness[3]. When faced with a health problem, patients do not simply receive a diagnosis; rather, they develop their own representation of what has happened by attempting to identify its cause, understand its consequences, determine how long it is likely to last, and evaluate whether and how it can be controlled.

This process may be particularly challenging in the case of unprovoked VTE. From a clinical perspective, this term indicates that no specific risk factor has been identified to explain the thrombotic event. For patients, however, the absence of an identifiable cause may create an explanatory gap. The question, “Why did this happen to me?” remains unanswered, prompting patients to fill this gap with personal explanations by attributing the event to stress, lifestyle, excessive physical exertion, family history, or other events that occurred before the thrombosis.

These interpretations concern not only the past but may also influence present and future decisions. For example, if a patient believes that VTE was caused by a temporary period of stress or by a single episode of excessive physical exertion, they may conclude that the risk has disappeared once that situation has resolved. Consequently, the need to continue long-term anticoagulant therapy may appear less compelling, even when the clinical assessment indicates a persistent risk of recurrence. The Dalì study highlights this potential discrepancy between the patient’s personal explanation and the clinician’s assessment of risk.

Alongside illness representations, it is also important to consider patients’ beliefs about treatment. Anticoagulant therapy may be perceived as a form of protection against recurrent VTE, but also as a source of concern because of the risk of bleeding, potential long-term adverse effects, and the daily burden of ongoing treatment. Attitudes toward anticoagulant therapy therefore arise from the balance between its perceived necessity and the concerns it generates. These two dimensions have been associated with treatment adherence in patients taking medications for chronic conditions[4,5]. In the Dalì study, this ambivalence emerged clearly: some patients reported feeling safer because of anticoagulant therapy, whereas others expressed doubts, concerns, and a desire to find alternatives.

These representations do not develop in isolation but are shaped through interactions with physicians and within the context of everyday life. In a qualitative study of patients with atrial fibrillation who had accepted, declined, or discontinued warfarin therapy, we found that decision-making about anticoagulation involved the physician–patient relationship, the balance between health-related needs and the demands of daily life, as well as beliefs and concerns about anticoagulant therapy and stroke risk[6]. These findings suggest that genuinely shared decision-making requires broadening the scope of the clinical consultation to include not only the clinical risks and benefits but also how patients understand and experience both the disease and its treatment.

For this reason, providing accurate information is necessary but not always sufficient. It is equally important to understand the explanation patients have developed for their thrombotic event, the level of risk they believe still exists, and the role they attribute to anticoagulant therapy.

A few simple questions may help clinicians explore these representations:

  • “What do you think may have caused your VTE?”
  • “How do you perceive your current risk of having another VTE?”
  • “What do you think is the role of anticoagulant therapy in your case?”
  • “What benefits do you expect from continuing anticoagulant therapy?”
  • “What is your main concern about anticoagulant treatment?”
  • “What would you like to understand better during follow-up?”

These types of questions are not intended merely to identify inaccurate information. More importantly, they help clinicians understand the patient’s perspective and develop a shared understanding of both the illness and its treatment. Supporting informed decision-making and promoting treatment adherence requires more than simply recommending continued anticoagulant therapy. It also requires understanding how patients interpret what has happened to them, whether they believe the risk of recurrence is still present, and what benefits and concerns they associate with treatment.

References
  1. Steiner D, Kitta A, Ay C. Subjective theory of illness, disease perception, and attitude toward anticoagulation therapy in patients with unprovoked venous thromboembolism-the qualitative Dalí study. J Thromb Haemost. 2026:S1538-7836(26)00354-5.
  2. van de Brug A, de Winter MA, Ten Wolde M, Kaasjager K, Nijkeuter M. Deciding on Treatment Duration for Unprovoked Venous Thromboembolism: What is Important to Patients? Thromb Haemost. 2022;122(4):600-10.
  3. Leventhal H, Phillips LA, Burns E. The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med. 2016;39(6):935-946. doi:10.1007/s10865-016-9782-2.
  4. Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res. 1999;47(6):555-567. doi:10.1016/S0022-3999(99)00057-4.
  5. Horne R, Chapman SCE, Parham R, Freemantle N, Forbes A, Cooper V. Understanding patients’ adherence-related beliefs about medicines prescribed for long-term conditions: a meta-analytic review of the Necessity-Concerns Framework. PLoS One. 2013;8(12):e80633. doi:10.1371/journal.pone.0080633.
  6. Borg Xuereb C, Shaw RL, Lane DA. Patients’ and physicians’ experiences of atrial fibrillation consultations and anticoagulation decision-making: a multi-perspective IPA design. Psychol Health. 2016;31(4):436–455. doi:10.1080/08870446.2015.1116534.

 

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