Evaluation of patients' experience and related qualitative outcomes in venous thromboembolism: A scoping review

Venous thromboembolism (VTE) is a prevalent disease with high morbidity and mortality. VTE has well‐documented physical sequelae; however, the psychological and emotional impacts are seldom evaluated in randomized controlled trials. 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. A systematic literature search was conducted to identify qualitative studies assessing patient experience of VTE. Two authors independently screened titles and abstracts using Covidence systematic review software. Full‐text reviews were conducted independently by 2 study team members. A modified method of “thematic synthesis” was used to collate themes upon reading and rereading of the publications. 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 subpopulations. 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. The physical, psychological, and emotional impacts of VTE extend beyond objective outcomes typically evaluated in clinical trials. An improved understanding of the outcomes most important to patients will improve patient‐centered care in VTE.