title: A Qualitative Study to Appraise Patients and Family Members Perceptions, Knowledge, and Attitudes towards Venous Thromboembolism Risk.
abstract: OBJECTIVE
  This study aimed to examine perception, knowledge and concerns developed by patients and their family as regards venous thromboembolism (VTE) risk.
  
  
  METHODS
  We 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.
  
  
  RESULTS
  A 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.
  
  
  CONCLUSIONS
  Construction 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.
authors.affiliation: LABERS, EA 3149, Université Européenne de Bretagne, Université de Brest, Brest. France.|CERMES3,Université Paris Descartes, EHESS, CNRS UMR 8211, INSERM U988, Paris, France.
authors.forename: Claudie
authors.initials: C
authors.lastname: Haxaire
authors.affiliation: Université Européenne de Bretagne, Université de Brest, EA3878, IFR148, Hôpital La Cavale Blanche, Département de Médecine Interne et Pneumologie. Brest, France.
authors.forename: Cécile
authors.initials: C
authors.lastname: Tromeur
authors.affiliation: Université Européenne de Bretagne, Université de Brest, EA3878, IFR148, Hôpital La Cavale Blanche, Département de Médecine Interne et Pneumologie. Brest, France.
authors.forename: Francis
authors.initials: F
authors.lastname: Couturaud
authors.affiliation: Université Européenne de Bretagne, Université de Brest, EA3878, IFR148, Hôpital La Cavale Blanche, Département de Médecine Interne et Pneumologie. Brest, France.
authors.forename: Christophe
authors.initials: C
authors.lastname: Leroyer
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005190:Family / Q000523:psychology*; D005260:Female; D005602:France / Q000453:epidemiology; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D036301:Qualitative Research; D012307:Risk Factors; D054556:Venous Thromboembolism / Q000453:epidemiology / Q000209:etiology* / Q000517:prevention & control*; D055815:Young Adult