[Information disclosure when screening for trisomy 21: a decision-making aid for pregnant women?].
We examined the contribution to decision-making of the information that is disclosed to women confronted with the proposition of screening for Down syndrome and when receiving the results. This review highlights the main results of a survey initiated by the French Ministry of Health. The purpose of this survey was to assess the modalities of prescription and results communication of the test, and also to determine the women's opinion concerning the information they had received. A large percentage of the women were dissatisfied with the information received before the test prescription, a percentage that was even more marked when the test results were delivered. Information was frequently regarded as not contributing to the decision-making process about testing and the data analysis suggested that information may not be adequate to prepare women for the decisions implied in the test results. However, a direct relationship cannot be established between satisfaction with information and contribution of the information to decision making: information may be considered as contributing to the decision although women did not understand the explanations; the contribution to decision-making does not have the same meaning when the test is proposed as a routine test (i.e. a self-evident act) or not. Finally, from the women's point of view, to make the "best possible" decision would require that health professionals' preferences regarding the information to be disclosed converge with the women's expectations regarding information, and with their preferences concerning the implication of health professionals in the decision-making process. In an operational perspective, the use of information and decision-making aid instruments could facilitate the elicitation of preferences and expectations.
Centre de Recherche en Economie et Gestion Appliquées à la Santé, INSERM U537-CNRS UPRESA 8052, 80, rue du Général-Leclerc, 94276 Le Kremlin-Bicêtre Cedex. seror@kb.inserm.fr
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D001294:Attitude to Health; D003661:Decision Support Techniques; D004314:Down Syndrome / Q000175:diagnosis* / Q000235:genetics; D005260:Female; D005602:France; D006801:Humans; D008403:Mass Screening / Q000379:methods / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods*; D011247:Pregnancy / Q000523:psychology*; D011296:Prenatal Diagnosis / Q000379:methods / Q000523:psychology*; D011795:Surveys and Questionnaires; D014342:Truth Disclosure