ABSTRACT
Background: Venous thromboembolism (VTE) is a prevalent disease with high morbidity and mortality. VTE has well-documented physical sequelae, however the psychological and emotional experience of patients is seldom evaluated in randomized controlled trials. Aim(s): We conducted a scoping review of published qualitative studies aiming to understand the physical, psychological, and emotional impact of VTE as reflected from patients' perspectives. This scoping review is part of a larger initiative to develop a core outcome set for VTE treatment studies. This research is funded by the Canadian Institutes of Health Research and CanVECTOR. Method(s): A systematic literature search was conducted to identify qualitative studies assessing patient experience of VTE. Two authors independently screened titles and s using Covidence systematic review software. Full text reviews were conducted independently by two study team members. QSR International NVivo 12 software was used to perform systematic line-by- line coding of the Results and Discussion from all included articles. A modified method of thematic synthesis was used to collate themes upon reading and re-reading of the publications. Result(s): Our search strategy returned a total of 4944 citations;28 were ultimately included in the analysis. The studies were conducted across 13 countries and representative of 436 participants including a spectrum of VTE sub-populations. There were seven major themes identified;Acute Impacts: An Unforeseen Blow, Sustained Psychological Distress, Loss of Self: Life is Changed, Challenges of Thrombosis Management, Balancing Coping and Control, Negative Experience with the Medical System, and VTE in the Context of Other Conditions. Each major theme was comprised of additional subthemes (Figure 1). Conclusion(s): The physical, psychological, and emotional impacts of VTE extend beyond the quantitative outcomes typically evaluated in clinical trials. An improved understanding of the outcomes most important to patients will improve patient-centered research and care in VTE.