ArticleResearch and practice in thrombosis and haemostasis2026
Item generation for a new disease-specific health-related quality of life questionnaire in patients with deep vein thrombosis: an international multicenter study.
Article in Research and practice in thrombosis and haemostasis, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Deep vein thrombosis (DVT) can lead to persistent physical symptoms and psychological burden that significantly impact patients' health-related quality of life (HRQoL). Despite the availability of disease-specific HRQoL questionnaires, a recent systematic review found that none fully adhered to current international development guidelines. Objectives: To develop an item list for a future disease-specific HRQoL questionnaire for patients in the chronic phase after a DVT, with a strong emphasis on capturing patient experiences. Methods: Following the European Organization for Research and Treatment of Cancer and US Food and Drug Administration guidelines, item generation was based on: (1) review of existing patient-reported outcome measures identified through a prior systematic review; (2) input from clinicians across Norway, Canada, and the Netherlands; and, most importantly, (3) qualitative data from semistructured focus group interviews with patients, which were analyzed thematically using Braun and Clarke's methodology. The resulting item bank was reviewed to remove duplicates and merge similar concepts by consensus. Results: Thematic analysis identified 4 major themes: discomfort, pain, limitations in functioning, and psychological impact. Combining interview data with literature-derived items and input from clinicians resulted in a comprehensive item bank of 400 items. After consolidation and review, a final 52-item list was established. Conclusion: We identified 52 items deemed relevant to patients' HRQoL in the chronic phase of DVT. By adhering to current guidelines and actively involving patients throughout the development process, we have laid the foundation for a new disease-specific HRQoL questionnaire for this population.
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