The importance of the general practitioner as an information source for patients with hereditary haemochromatosis
SourcePatient Education and Counseling, 96, 1, (2014), pp. 86-92
Article / Letter to editor
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Laboratory of Genetic, Endocrine and Metabolic Diseases
Patient Education and Counseling
SubjectRadboudumc 11: Renal disorders RIMLS: Radboud Institute for Molecular Life Sciences
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.
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