Abstract
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.
Keywords
deep venous thrombosis - pulmonary embolism - qualitative research - anticoagulation
- shared decision-making
