The importance of the general practitioner as an information source for patients with hereditary haemochromatosis

Patient Educ Couns. 2014 Jul;96(1):86-92. doi: 10.1016/j.pec.2014.04.017. Epub 2014 May 5.


Objective: To explore hereditary haemochromatosis (HH) patients' perspectives on genetic information, namely the types of sources used, preferred or trusted.

Methods: A survey online was conducted by the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and applied to members of nine National Associations.

Results: From a total of 1019 validated questionnaires, 895 respondents had performed a genetic testing for HH. From these, 627 self-declared that they were sufficiently informed about the implications of the genetic test to their health. The majority (66%) obtained the information from a specialist doctor, but would like to obtain it from the family doctor. However, the specialist was still the one they trusted more (69%). Regarding the 298 respondents who did not feel sufficiently informed, the majority (78%) also would like to have information from the family doctor although they also trusted the specialist more (75%). A different perspective was reported when patients were asked about the implications of the genetic testing to their family members, where the majority of respondents preferred obtaining information from a specialist (69%).

Conclusion: This study elucidates the patients' needs for information and identifies the general practitioner (GP) as the preferred source to obtain information about HH.

Practice implications: These results may have important implications in future strategies for HH awareness, giving a special emphasis on GPs as the main players.

Keywords: General practitioner; Hereditary haemochromatosis; Patient communication; Sources of information.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Communication*
  • Female
  • General Practitioners*
  • Genetic Testing
  • Health Knowledge, Attitudes, Practice*
  • Hemochromatosis / diagnosis*
  • Hemochromatosis / genetics
  • Humans
  • Information Seeking Behavior*
  • Internet
  • Male
  • Middle Aged
  • Patient Education as Topic*
  • Surveys and Questionnaires
  • Young Adult