Written information to patients in clinical genetics: what's the impact?

In all countries of the European Union, oral information must be given to the patient. Written information is generally optional, but physicians are tending more and more to send a copy of the clinical report to the patient. In this study, we aimed to evaluate the impact on patients of sending them written information after a clinical consultation in a French genetics department. During a period of three months, two geneticists and one genetic counselor offered to send each patient a copy of the letter sent to their general practitioners. A questionnaire was sent with this copy. Three hundred and seventy-five patients were seen and 64% of the questionnaires were sent back. Of these, 99% showed that this practice was considered a good idea, and 80% reported that the letter reflected the clinical aspects well. Seventy-two percent thought that receiving this letter improved their understanding of the clinical situation. In general, patients found the words understandable (83%), too medical (20%) or even shocking (3%). Sixty-three percent said that they would have asked their general practitioner to give them the letter. Their main motivation for wanting a copy of this letter was to remember the information in the future, to have the information to pass on to other physicians involved in their health in the future, or to have information concerning the family. Finally, 58% would have preferred a letter sent specifically to them rather than a copy, and suggestions for the contents of such a letter should be further studied.