Abstract
ObjectiveThis study aimed to examine perception, knowledge and concerns developed by patients and their family as regards venous thromboembolism (VTE) risk.MethodsWe conducted a qualitative study. Participants were: (1) patients with unprovoked VTE with either factor V Leiden mutation or G20210A prothrombin gene mutation or not; and (2) their first-degree relatives. Interviews took place mostly at Brest University Hospital. Participants produced narratives of the patient’s illness, stressing their perception of the disorder, its mechanisms, etiology, circumstances and risk factors. Interviews were audiotaped and transcribed verbatim. On an ongoing basis, central themes were identified and data from narratives were categorized by these themes.ResultsA total of ten patients and 25 first-degree relatives were interviewed. Analyses of patient’s narratives suggested 4 main themes: (1) concerns about initial symptoms and suspicion of VTE. The longer the duration of the initial phase, the more likely anxiety took place and persisted after diagnosis; (2) underestimation of potential life-threatening episode once being managed in emergency; (3) possible biographical disruption with inability to cope with the event; and (4) secondary prevention attitudes motivated by remains of the episode and favoring general prevention attitudes. Analyses of the first-degree relatives narratives suggested 3 main themes: (1) common interpretation of the VTE episode shared within the family; (2) diverse and sometimes confusing interpretation of the genetic status; and, (3) interpretation of clinical signs linked to VTE transmission within the family.ConclusionsConstruction of the risk of VTE is based on patient’s initial experience and shared within the family. Collection of narratives illustrates the gap between these perceptions and current medical knowledge. These results support the need to collect the perceptions of the VTE episode and its consequences, as a prerequisite to any health education process.
Highlights
Venous thromboembolism (VTE) is a multifactorial disease caused by hereditary and acquired risk factors [1]
The longer the duration of the initial phase, the more likely anxiety took place and persisted after diagnosis; (2) underestimation of potential life-threatening episode once being managed in emergency; (3) possible biographical disruption with inability to cope with the event; and (4) secondary prevention attitudes motivated by remains of the episode and favoring general prevention attitudes
Analyses of the first-degree relatives narratives suggested 3 main themes: (1) common interpretation of the venous thromboembolism (VTE) episode shared within the family; (2) diverse and sometimes confusing interpretation of the genetic status; and, (3) interpretation of clinical signs linked to VTE transmission within the family
Summary
Venous thromboembolism (VTE) is a multifactorial disease caused by hereditary and acquired risk factors [1]. We, as others, showed that the risk of thrombosis in first-degree relatives of patients with VTE and factor V Leiden or the prothrombin 20210A gene variant was higher if they had the same abnormality compared to neither abnormality [4,5,6]. In a large cross-sectional study comparing the risk of VTE in first-degree relatives of patients with a first unprovoked VTE, we showed that the presence or the absence of factor V Leiden of the prothrombin G20210A gene variant had little impact on the risk of VTE in their first-degree relative [7]. The main hypothesis was that patients with a first unprovoked VTE at young age and no detectable inherited thrombophilia are likely to have an unknown thrombophilia that have yet to be discovered and that these defects increase the risk of thrombosis in their relatives
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