Background: After the initial three months of anticoagulation for unprovoked venous thromboembolism (VTE), a decision must be made to stop or continue indefinitely. Patient’s wishes are ideally taken into account during a risk-benefit analysis through shared decision-making (SDM). However, it is unknown how to do this since patients’ perspectives on treatment duration and SDM have not been studied in unprovoked VTE.

Aims: To explore patients’ perspectives on VTE, patient education and their understanding of the risk-benefit consideration of extended anticoagulation; to improve SDM in practice.

Methods: Semi-structured interviews were conducted between May 2019 and February 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. Data collection is ongoing until data saturation is reached.

Results: Interviews of nine patients aged 44-83 years have been analyzed thus far. Three major themes were identified (Figure 1). Coping strategies and opinion on medical care suffused throughout the major themes. The narratives demonstrated a need for individualized care, clear information about treatment options and associated (dis)advantages and insight into physician’s considerations. Some experienced a lack of information and SDM. They were unaware of the choice at hand as physicians only proposed a treatment plan without explaining other options. This often led to frustration, anxiety, dissatisfaction with received care and distrust in treatment. Patients who experienced SDM and found the received information sufficient were more content with received care and trusted the efficacy of anticoagulation. Perceived disadvantages of extended treatment were heterogeneous and sometimes based on misconceptions.

Conclusions: Preliminary findings show that sufficient information and adequate SDM are of crucial importance for patients when deciding on treatment duration after unprovoked VTE.
Further analyses are ongoing to identify additional themes and verify findings to provide practical tools to improve SDM in practice.

[Figure 1. Main themes and subthemes derived from preliminary data]

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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/extended-treatment-in-unprovoked-venous-thromboembolism-what-is-important-to-patients/