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

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.

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“…Clearly there is a lot that patients go through, following a VTE diagnosis and HMB would only add to this, particularly under the sub-theme of burden of anticoagulation , identified by the authors of this review. Clinicians should be mindful of this as it once again highlights the importance of trying to prevent HMB in the first place [ 41 ].…”

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“…Thus far, trials in VTE have focused most frequently (almost exclusively) on objective binary primary outcomes such as bleeding, recurrent VTE, and mortality. 17 19 Adding patient-reported outcome measures (PROMS) capturing QoL and/or functional outcomes to the primary outcome instead of using PROMS as a secondary outcome or merely an afterthought would broaden the scope of such trials, facilitating translation of the findings of a trial to daily clinical practice.…”

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“…A Canadian study identified seven major themes related to patients’ experiences with VTE: acute impacts (initial shock and physical symptoms), sustained psychological distress (fear of recurrence and death), loss of self (changing habits and taking decisions for the future), challenges of VTE treatment (anticoagulation and elastic compression stockings), balance of life changes, negative experience with the medical system (delays and diagnostic errors), and VTE in the context of other conditions. 4 …”

“…Um estudo canadense levantou sete temas maiores relacionados à experiência do paciente com TEV: o impacto agudo (choque inicial e sintomas físicos), o sofrimento psicológico persistente (medo de recorrência e morte), a perda de si mesmo (mudanças de hábitos e tomada de decisões para o futuro), os desafios no tratamento do TEV (anticoagulação e meias de compressão elástica), o equilíbrio nas mudanças de vida, a experiência negativa com o sistema de saúde (atrasos e erros diagnósticos) e o TEV no contexto de outras doenças 4 .…”