OC 14.4 - Evaluation of patients’ experience and related qualitative outcomes in venous thromboembolism: A scoping review

Sunday, July 10, 2022

11:30 AM – 11:45 AM

Location: ExCel Center, ICC Capital Suite Room 7&12

Presentation Format: In-Person

Presenting Author(s)

Leanne Genge, BSc, MD, FRCPC

Haematology Resident Physician
University of Calgary
Toronto, Ontario, Canada

Co-Author(s)

AK

Alexa Krala

Undergraduate Student
University of Calgary
Calgary, Alberta, Canada
Tobias Tritschler, MD, MSc

MD, MSc
Department of General Internal Medicine, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland
Bern, Bern, Switzerland
Gregoire Le Gal, MD PhD

MD, PhD
Ottawa Hospital Research Institute, University of Ottawa, Canada
Ottawa, Ontario, Canada
NL

Nicole J. Langlois

RN, MSc
Ottawa Hospital Research Institute, University of Ottawa, Ontario, Canada
Ottawa, Ontario, Canada
CW

Carol West

Patient Partner
CanVECTOR
Chelsea, Quebec, Canada
SD

Suzanne Dubois

Patient Partner
CanVECTOR
Brantford, Ontario, Canada
LD

Lisa Duffett

Assistant Professor
Department of Medicine, University of Ottawa, Ottawa, ON, Canada
Ottawa, Ontario, Canada
Leslie Skeith, MD

Associate Professor
University of Calgary
Calgary, Alberta, Canada

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.

Aims: 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.

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 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.

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 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.