To be or not to be: the patient's view of thrombophilia testing

Patient Educ Couns. 2013 Mar;90(3):386-91. doi: 10.1016/j.pec.2011.11.002. Epub 2011 Dec 15.

Abstract

Introduction: The literature on the psychological effects of thrombophilia testing is unclear. Little is known about the complex world of significance subjects construct around the test.

Objective: The study explored the peculiar network of implicit meanings that may be linked to the experience of being tested.

Materials and methods: The research was designed according to Interpretative Phenomenological Analysis (IPA). 19 patients were interviewed. Integral verbatim reports of the interviews were analyzed through an inductive process aimed at gaining a holistic understanding of the narratives.

Results: Two main issues were identified, each with sub-issues: (1) the clinical problem: (1.1) unhealthy blood and (1.2) the family issue; (2) the test: (2.1) knowing for the sake of knowing; (2.2) knowing for the sake of doing; (2.3) not knowing.

Conclusions: The thrombophilia test is part of a larger network of meanings, where information about the test and its results seem to be lost.

Practice implication: The study suggests the importance of paying greater attention to the process of doctor-patient communication at the time of the test. The theme of being informed is important for patients, yet often they are not able to understand or retain the information they receive, increasing the risk of misunderstandings.

MeSH terms

  • Adult
  • Aged
  • Attitude to Health
  • Communication*
  • Female
  • Genetic Predisposition to Disease
  • Genetic Testing*
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Patient Education as Topic
  • Physician-Patient Relations*
  • Thrombophilia / complications
  • Thrombophilia / diagnosis
  • Thrombophilia / genetics
  • Thrombophilia / psychology*
  • Venous Thrombosis / genetics
  • Young Adult