RESUMO
BACKGROUND: After 3 months of anticoagulation for unprovoked venous thromboembolism (VTE), a decision must be made to stop or continue indefinitely by weighing risks of recurrence and bleeding through shared decision-making (SDM). Despite the importance of patient involvement, patients' perspectives on treatment duration are understudied. AIM: To describe the knowledge of VTE and anticoagulation, need for education, perception of risks and benefits of extended treatment, and factors influencing patient's preference to stop or continue treatment after unprovoked VTE. METHODS: Semistructured interviews were conducted between May 2019 and August 2020 with adults with unprovoked VTE in one university hospital and one general hospital. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using conventional content analysis. RESULTS: Eighteen patients were interviewed (median age 64, range: 32-83 years). Three major themes were identified: diagnosis and initial treatment, SDM, and perception of treatment. Education, knowledge, coping, and attitude toward health care suffused major themes. The impact of VTE on daily life varied between individuals, as did the preferred extent of SDM. Overall, patients who felt involved and informed were more satisfied with received care, more aware of risks and benefits of treatment, and more likely to be treatment adherent. Generally, patients were more concerned with risk of recurrent VTE than with risk of bleeding during anticoagulation. We identified a multitude of aspects important to patients when deciding to stop or continue anticoagulation. CONCLUSION: Sufficient information and an individualized extent of SDM are of crucial importance for patients when deciding on treatment duration after unprovoked VTE.