A Qualitative Study to Appraise Patients and Family Members Perceptions, Knowledge, and Attitudes towards Venous Thromboembolism Risk

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.

Long‐term mental wellbeing of adolescents and young adults diagnosed with venous thromboembolism: results from a multistage mixed methods study

“…This may explain our finding of psychological distress and an increased risk of psychotropic drug purchase both among AYAS with relatively innocuous DVT and among those with the more serious PE, as they all live with the risk of recurrence and concomitant uncertainty. This finding is in line with former studies reporting similar psychosocial outcomes for DVT and PE patients , and with observations in young breast cancer survivors, in whom initial cancer severity does not seem to affect the subsequent fear of recurrence . Thus, our results emphasize the potential importance of illness perception for mental wellbeing, which has also been described for a number of other diseases, including diabetes, congenital heart disease, and cancer .…”

“…, who reported better QOL in patients with PE caused by a transient risk factor than in patients with unprovoked PE or PE caused by permanent risk factors. Our study elaborated on previous research into the experience of VTE, which has shown worry and anxiety in relation to not knowing the cause of VTE . In our study, knowing the cause of VTE was linked to the perceived chance of determining the risk of recurrence.…”

Patient values and preferences regarding VTE disease: a systematic review to inform American Society of Hematology guidelines

“…A set of 56 records identified from electronic database searches was selected for inclusion, and 3 additional studies [80][81][82] were identified by checking references included in a previously published guideline on the same topic. 83 Overall, we included 44 quantitative studies, [55][56][57][58][59][60][61][62][63][64][65][80][81][82] 14 qualitative studies, [66][67][68][69][70][71][72][73][74][75][76][77][78][79] and 1 study with both types of evidence 54 (Figure 1). Fourteen of the included studies reported patients' values or utilities, [24][25][26][27][28][29][30][31][32][33][34][35][36][37] 34 nonutility studies use...…”

Diagnosis and Treatment Options for Pulmonary Embolism (PE) in the Acute Care Setting

“…In fact, a new formal cost-effectiveness study might help establish whether changing the current diagnostic strategy will result in better symptomatic management of suspected acute PE [18].…”

“…In fact, the study notes that there is a gap between perceptions and current medical knowledge regarding VTE. Therefore, the practitioner must gather more information on the attitudes of the VTE episode and its consequences as part of any health education process [18].…”