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

PATIENT EDUCATION AND COUNSELING

卷:96

Article

Teixeira, Emerencia^1,2  Borlido-Santos, Julio¹  Brissot, Pierre^3,4  Butzeck, Barbara^5,22  Courtois, Francoise^9,22  Evans, Robert W.^6,7  Fernau, Janet⁷  Nunes, Joao Arriscado⁸  Mullett, Margaret⁹  Paneque, Milena^1,10  Pineau, Brigitte¹¹  Porto, Graca^1,10,12,13  Sorrill, Robert¹⁴  Sanchez, Mayka^15,16  Swinkels, Dorine W.^17,18  Toska, Ketil¹⁹  Varkonyi, Judit^20,21 

[1] Univ Porto, IBMC Inst Mol & Cell Biol, P-4150180 Oporto, Portugal

[2] Univ Porto, FCUP Fac Sci, P-4150180 Oporto, Portugal

[3] Pontchaillou Univ Hosp, Natl Reference Ctr Rare Iron Overload Disorders G, Rennes, France

[4] Pontchaillou Univ Hosp, Inserm U991, Rennes, France

[5] Haemochromatose Vereinigung Deutschland eV HVD, Cologne, Germany

[6] Brunel Univ, Dept Elect & Comp Engn, Doctor On A Chip Lab, Uxbridge UB8 3PH, Middx, England

[7] Haemochromatosis Soc, Barnet, Herts, England

[8] Univ Coimbra, CES Ctr Social Studies, P-3000 Coimbra, Portugal

[9] Irish Haemochromatosis Assoc, Dublin, Ireland

[10] CGPP Ctr Predict & Prevent Med, Oporto, Portugal

[11] FFAMH Federat Francaise Assoc Malades Hemochromat, Paris, France

[12] Santo Antonio Hosp, Porto Hosp Ctr, CHP HSA, Oporto, Portugal

[13] Assoc Portuguesa Hemocromatose, Oporto, Portugal

[14] Assoc Studio Emocromatosi & Malattie Sovraccarico, Monza, Italy

[15] IMPPC Inst Predict & Personalized Med Canc, Barcelona, Spain

[16] IJC Josep Carreras Leukemia Res Inst, Barcelona, Spain

[17] Radboud Univ Nijmegen, Med Ctr, Lab Genet Endocrine & Metab Dis LGEM 830, Dept Lab Med, NL-6525 ED Nijmegen, Netherlands

[18] Hemochromatose Vereniging Nederland, Leidschendam, Netherlands

[19] Norwegian Haemochromatosis Assoc, Bergen, Norway

[20] Semmelweis Univ, Dept Internal Med 3, H-1085 Budapest, Hungary

[21] Hemokromatozisos Betegek Eyesulete, Budapest, Hungary

[22] EFAPH European Federat Assoc Patients Haemochroma, Croissy Sur Seine, France

关键词: Hereditary haemochromatosis;    Patient communication;    Sources of information;    General practitioner;   

DOI  :  10.1016/j.pec.2014.04.017

来源: Elsevier

【 摘 要 】

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. (C) 2014 Elsevier Ireland Ltd. All rights reserved.

【 授权许可】

Free