Subjective theory of illness, disease perception, and attitude toward anticoagulation therapy in patients with unprovoked venous thromboembolism-the qualitative Dalí study.

BACKGROUND

Adherence to anticoagulant therapy in patients with unprovoked venous thromboembolism (VTE) might be influenced by disease perception.

OBJECTIVES

We aimed to understand disease perception, including subjective theory of illness, and attitude toward anticoagulation therapy in patients with unprovoked VTE.

METHODS

We conducted a qualitative study encompassing semistructured interviews of patients with unprovoked VTE 3 to 12 months from diagnosis with a medical recommendation for long-term anticoagulation therapy. Patients were asked about diagnosis, self-perceived reasons for VTE, attitude toward anticoagulation therapy, and changes in daily life. Thematic analysis was performed to identify common themes. Additionally, patients were given 5 color pencils and were asked to express on paper what was important to them regarding diagnosis and management.

RESULTS

From November 2024 to March 2025, we interviewed 22 patients with unprovoked VTE, including 10 (45.5%) women and 10 (45.5%) patients aged <50 years. Self-perceived reasons for unprovoked VTE included psychological stress; physical overload/overexertion; lifestyle; family history; and specific events prior to VTE. We identified the following themes: (1) VTE as a threatening and life-changing event; (2) feelings of uncertainty and lack of understanding; and (3) ambivalence with therapeutic options and follow-up. Common themes on paper included the human body, the sun, and written text.

CONCLUSION

Despite the lack of identifiable clinical reasons for a thrombotic event in patients with unprovoked VTE, patients themselves expressed various subjective theories of illness. These subjective theories of illness and patient-relevant themes might influence adherence to anticoagulation therapy and should therefore be openly discussed with patients to be incorporated into shared decision-making.