• Waleed Ghanima, Hilde Skuterud Wik, Mazdak Tavoly, Tone Enden, and Lars-Petter Jelsness-Jørgensen.
• Departments of Medicine, Østfold Hospital, Norway; Institute of Clinical Medicine, University of Oslo, Norway; Department of Haematology, Oslo University Hospital, Norway. Electronic address: waleed.ghanima@so-hf.no.
• Thromb. Res. 2018 Apr 1; 164: 170-176.

AbstractThe identification of specific post-thrombotic complications as well as an increased appreciation of the importance of patient-reported outcome measures have triggered an interest in studying health-related quality of life (HRQoL) in patients with a history of venous thromboembolism (VTE). In order to enable a comprehensive assessment of HRQoL in clinical trials it is recommended that both generic and disease-specific questionnaires be used. SF-36 and EQ-5D are the most widely used generic questionnaires in VTE studies, whereas several disease-specific questionnaires have been developed to evaluate HRQoL following deep vein thrombosis (DVT) and in chronic venous disease (CVD). The most widely used of these is the VEINES-QOL/Sym, which was developed for CVD. VT-QOL and DVTQOL are both questionnaires developed to evaluate HRQoL after DVT, while PEmb-QoL is currently the only available disease-specific questionnaire developed specifically for pulmonary embolism (PE). Although studies show inconsistent results, patients who sustain DVT seem in general to report similar HRQoL compared to the general population. However, patients who develop PTS after DVT report poorer HRQoL using both generic and disease-specific questionnaires. HRQoL appears to be impaired in patients who sustain PE compared to the general population. In these patients, persistent dyspnea after PE has been shown to be a predictor of reduced HRQoL. Further work is needed to develop practical, patient-derived, valid, reliable and responsive disease-specific HRQoL instruments covering the specific aspects of these diseases.Copyright © 2017 Elsevier Ltd. All rights reserved.

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