To improve the quality and accuracy of the patient‐reported outcome measures that assess health‐related quality of life (HRQoL), guidelines have been developed to standardize the development and validation process. Considering the increasing importance of HRQoL questionnaires in research, we set out to review the literature and evaluate whether existing questionnaires developed for deep vein thrombosis (DVT) and pulmonary embolism (PE) fulfill state‐of‐the‐art requirements. The literature search was conducted in March 2019 and updated in September 2020. Seven databases were searched. No time limit was set for the search to include all available questionnaires. The inclusion criteria were original publications describing the development of disease‐specific HRQoL questionnaires specific to DVT or PE in adults and available in English. The questionnaires were assessed to determine whether they fulfill the requirements in the latest guidelines. A total of 3826 references were identified. After the exclusion process, 15 papers were reviewed in full, of which 7 were included. Four questionnaires were developed for chronic venous disease, two were specific to DVT, and one was specific to PE. Most questionnaires we found in this review, fulfilled some but none fulfilled all recommendations in existing guidelines. Because the development of current available HRQoL questionnaires specific to DVT or PE do not fulfil all recommendations of existing guidelines, there is room for improvements within this field. Such improvements could likely enhance the quality associated with the use of these end points in clinical trials and practice.

There is a growing body of evidence revealing that many patients with a history of venous thromboembolism (VTE) suffer from long-lasting sequelae such as post-thrombotic syndrome and post-pulmonary embolism syndrome. These two syndromes are detrimental to patients as they affect their quality of life (QOL). From this perspective, monitoring QOL may play a crucial role to improve quality care in VTE patients. Many studies have explored possible temporal relations between VTE episodes and decreased functional status and/or QOL. However, studies exploring the implementation of QOL and functional status questionnaires in clinical practice are scarce. In this context, we discuss possible perspectives synthetized from available literature regarding in whom, when, and how QOL could be measured in clinical practice.

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