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Development of a New Disease-specific Health-related Quality of Life Questionnaire after Deep Vein Thrombosis: Qualitative Phase of a Mixed Method Development

E. Asady1,2, W. Ghanima2,1,3, L.-P. Jelsness-Jorgensen2,4, F. Klok5, G.J. Boon5, H. Skuterud Wik3

1University of Oslo, Oslo, Norway, 2Østfold Hospital Trust, Grålum, Norway, 3Oslo University Hospital, Oslo, Norway, 4Østfold University College, Halden, Norway, 5Leiden University Medical Center, Leiden, Netherlands

Abstract Number: PB1151

Meeting: ISTH 2021 Congress

Theme: Venous Thromboembolism » Post-thrombotic Syndrome

Background: Several Health-related quality of life (HRQoL) questionnaires for deep vein thrombosis (DVT) are available. None of these have however been developed in full accordance with current standards for questionnaire development.

Aims: To develop a new disease-specific HRQoL questionnaire for DVT in accordance with state-of-the-art standards, as defined by current guidelines.

Methods: The questionnaire development was setup as a phase I-IV study, of which results from phase II are presented in this abstract. Phase II consisted of item generation by conducting interviews with the target population. Accordingly, we conducted seven semi-structured group interviews with 40 DVT patients, at least 12 weeks after the acute event, in Norway and The Netherlands. Thematic analysis based on Braun & Clarke’s method was used to analyze the transcripts from the interviews, in which relevant issues were identified and grouped into themes.

Results: Four main themes concerning issues that affected patients most in their daily life were identified from the interview material. Theme 1) Leg pain, Theme 2) Discomfort, consisting of the following issues: heavy legs, cramps, swelling, itching, fatigue, discomfort due to use of elastic compression stockings, Theme 3) Limitations, consisting of limitations in daily activity, social life and work, Theme 4) Psychological influence, consisting of worries about cause of thrombosis and risk of recurrent DVT or bleeding, bad mood, frustration, feeling of helplessness, concentration problems, altered choice of clothing, and feeling mortal.

Conclusions: During the semi-structured group interviews, we identified several issues in the chronic phase after DVT. These issues will form the basis for further evaluation and testing in phase III and IV in the questionnaire development.

To cite this abstract in AMA style:

Asady E, Ghanima W, Jelsness-Jorgensen L-, Klok F, Boon GJ, Skuterud Wik H. Development of a New Disease-specific Health-related Quality of Life Questionnaire after Deep Vein Thrombosis: Qualitative Phase of a Mixed Method Development [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/development-of-a-new-disease-specific-health-related-quality-of-life-questionnaire-after-deep-vein-thrombosis-qualitative-phase-of-a-mixed-method-development/. Accessed May 20, 2022.

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