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. 2022 Oct;20(10):2323-2341.
doi: 10.1111/jth.15788. Epub 2022 Jul 18.

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

Leanne Genge  1 , Alexa Krala  2 , Tobias Tritschler  3 , Gregoire Le Gal  4 , Nicole Langlois  4 , Suzanne Dubois  5 , Carol West  5 , Lisa Duffett  4 , Leslie Skeith  1
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Free article

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

Leanne Genge et al. J Thromb Haemost. 2022 Oct.
Free article

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 impacts are seldom evaluated in randomized controlled trials.

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: health care; outcome assessment; pulmonary embolism; qualitative research; review; thromboembolism; venous thromboembolism; venous thrombosis.

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References

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