Download het volledig rapport (302 p.) - KCE

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KCE reports vol. 6A Prenatale zorg 220 Study Ref Population Intervention Outcomes Results understanding of test results Comments Study type Delvaux et al., 2001 Botkin and Alemagno, 1992 94 314 couples undergoing prenatal diagnosis (amniocenteses) for reasons not related to CF, in The University Hospital in Ghent 95 306 pregnant Caucasian women (214 respondents), Cleveland and Ohio Offering maternal prenatal screening with 15 minutes explaining about CF and CF screening self-report questionnaires A questionnaire: Part 1 assessed demographic information, attitudes about the present pregnancy, history of Short-term knowledge of CF Long-term knowledge of CF Attitude towards carrier screening and carriership All participants who reported that they were worried, all carriers and 95% of the other participants said they would make the decision to be tested again 13 female CF carriers were identified, none of their partners carried an identifiable mutation Most couples recalled important medical and genetic issues Most couples valued the genetic test for CF and seemed to cope well with the results Risk estimates and actual numbers were more difficult to process and recall From the small number of couples in which the woman alone was found to be a carrier, there was little or no evidence of marked distress 98% said that screening should be offered before pregnancy 69% would accept screening during pregnancy No information on the decline or acceptance rate Active knowledge was not tested The hypothetical nature of this study limits the ability to make confident predictions of EL SV 3 SV 3
KCE reports vol. 6A Prenatale zorg 221 Study Ref Population Intervention Outcomes Results Comments Study type EL previous pregnancies 29% indicated a willingness to actual behaviour Part 2 consisted of terminate a pregnancy if the foetus in a screening information about CF, the carrier state, was found to have CF program reproductive options Attitudes may for carriers vary with time, Part 3 consisted of a clinical approach test of factual knowledge of CF, followed by items designed to ascertain attitudes about testing and reproductive decisions and validity Watson et al., 96 261 parents of children Anonymous postal Attitudes 92% would support the introduction SU 3 1992 attending the Royal questionnaire towards prenatal of a population screening test to Brompton National Heart diagnosis and detect carriers and Lung Hospital cystic Response rate: population fibrosis clinic 170/261 (65%) carrier screening for cystic fibrosis 19% felt the test should be mandatory 64% would chose not to have children in the knowledge that they were both carriers 74% would choose to have a prenatal test if they became pregnant 44% would consider terminating an affected pregnancy, 33% would not and 23% were unsure 72% indicated they would choose to avoid having a further child with CF
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NATIONALE RICHTLIJN PRENATALE ZORG:
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Nationale richtlijn prenatale zorg:
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KCE reports 1. Effectiviteit en kos
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