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

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

Author information

1
IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal; FCUP - Faculty of Science, University of Porto, Porto, Portugal.
2
IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal.
3
National Reference Centre for Rare Iron Overload Disorders of Genetic Origin and Inserm U-991, Pontchaillou University Hospital, Rennes, France.
4
Haemochromatose-Vereinigung Deutschland e.V.(HVD), Koeln, Germany; EFAPH - European Federation of Associations of Patients with Haemochromatosis, Croissy-sur-Seine, France.
5
FFAMH - Fédération Française des Associations de Malades de l'Hemochromatose, Paris, France; EFAPH - European Federation of Associations of Patients with Haemochromatosis, Croissy-sur-Seine, France.
6
Doctor-on-a-Chip Laboratory, Department of Electronic and Computer Engineering, School of Engineering and Design, Brunel University, Uxbridge, United Kingdom; The Haemochromatosis Society, Hertfordshire, United Kingdom.
7
The Haemochromatosis Society, Hertfordshire, United Kingdom.
8
CES - Centre for Social Studies, University of Coimbra, Coimbra, Portugal.
9
Irish Haemochromatosis Association, Dublin, Ireland.
10
IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal; CGPP - Centre for Predictive and Preventive Medicine, Porto, Portugal.
11
FFAMH - Fédération Française des Associations de Malades de l'Hemochromatose, Paris, France.
12
IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal; CGPP - Centre for Predictive and Preventive Medicine, Porto, Portugal; CHP-HSA, Porto Hospital Center - Santo António Hospital, Porto, Portugal; Associação Portuguesa de Hemocromatose, Porto, Portugal. Electronic address: GPorto@ibmc.up.pt.
13
Associazione per lo Studio di Emocromatosi e delle Malattie da Sovraccarico di Ferro, Monza, Italy.
14
IMPPC - Institute of Predictive and Personalized Medicine of Cancer, Badalona, Barcelona, Spain; IJC - Josep Carreras Leukemia Research Institute, Barcelona, Spain.
15
Department of Laboratory Medicine, Laboratory of Genetic, Endocrine and Metabolic Diseases (LGEM 830) Radboud University Medical Centre, Nijmegen, The Netherlands; Hemochromatose Vereniging Nederland, Leidschendam, The Netherlands.
16
Norwegian Haemochromatosis Association, Bergen, Norway.
17
3rd Department of Internal Medicine, Semmelweis University, Budapest, Hungary; Hemokromatozisos Betegek Eyesülete, Budapest, Hungary.

Abstract

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

PMID:
24857332
DOI:
10.1016/j.pec.2014.04.017
[Indexed for MEDLINE]

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