Health‐related quality‐of‐life questionnaires for deep vein thrombosis and pulmonary embolism: A systematic review on questionnaire development and methodology

Abstract

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.

Cross-cultural validity of the Pulmonary Embolism Quality of Life questionnaire in the quality of life survey after pulmonary embolism: A Persian-speaking cohort

“…[ 15 ] structured dimensions through clinical concepts and patient interviews for the current version of the questionnaire. However, the suggested structure should be bolstered through exploratory factor analysis before the confirmatory process [ 8 , 12 ]. Our EFA suggested a 3-factor structure closely resembling the study of the French population [ 17 ].…”

“…The chronic complications of acute PE are also taxing on one’s psychological and social status. The long-term risk of purchasing psychotropic drugs is substantially increased in adolescents with a history of PE, with more than a quarter of the previously employed patients not returning to work even one year after the initial PE episode [ [6] , [7] , [8] ].…”

Mental Health and Quality of Life in Pulmonary Embolism: A Literature Review

“…The first and only disease- specific questionnaire is the Pulmonary Embolism-Quality of Life (PEmb-QoL) questionnaire [ 26 , 27 ]. A systematic review assessing the methodology and development of instruments about HRQoL questionnaires for patients with venous thromboembolism concluded that none of the available instruments fulfill the guideline recommendations and, due to other methodological limitations, their use in everyday practice has limitations [ 28 ].…”

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“…The survey was used to collect quantitative date from sample of students, and it was distributed to the students during the second year of academic of 2019/2020, throughout the spread of the COVID-19 pandemic. During the questionnaire development process, the literature and related studies in this field, such as studies conducted by [70] . The questions were consisted of two parts.…”