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KCE reports vol. 6A Prenatale zorg 222 Study Ref Population Intervention Outcomes Results Comments Study type EL Decruyenaere 97 358 adults who where Self-report Knowledge, Knowledge: 59% reported that they Only 19% are still SU 3 et al., 1992 following the courses of questionnaire: perceived burden had heard of CF, only 38% could give considering the Center for Family The knowledge and attitudes at least one feature of CF, 46% had a a(nother) Science in Brussels questionnaire (open score of 0 on the multiple-choice pregnancy because this group is and multiple-choice questionnaire presumed to be interested questions) in psychosocial topics Concise written Perceived burden: on a 7-point scale: information about 1% answered they would have no specific genetic problem coping with the birth of a CF- diseases and tests child, 5% presumed they would not be The attitude - able to manage, the middle position questionnaire was most frequently used. Watson et al., 1991 98 268 relatives of those with CF Assessment of knowledge about CF Knowledge about CF Attitude: 63% expressed interest in knowing their carrier status 76% prefer to receive sufficient information so that they are free to decide whether they take the test or not 86% find that screening programs should be available prior to pregnancy (46% before marriage, 40% before pregnancy) If being at 25% risk for having a CFchildren: 45% said they would give up having children, 41% said they would choose to have children but would make use of prenatal diagnosis 38% said they would certainly make use of prenatal diagnosis and 37% would probably make use of it Relatives of CF sufferers were unanoumisly in favour of the SU 3
KCE reports vol. 6A Prenatale zorg 223 Study Ref Population Intervention Outcomes Results Comments Study type and attitudes toward introduction of CF screening 363 community members screening Attitudes toward (177 school pupils and 186 screening 75% of respondents in the group of family planning clinic health care professionals believe the attenders) introduction of screening would be worthwhile Cobb et al., 1991 227 health care professionals (general practitioners and family planning clinic staff) in the North West Thames region 99 216 school students aged 14 to 16 years in Edinburgh Assessment of the knowledge of CF and the views about neonatal and carrier screening: Initial questionnaire, testing basic knowledge A lecture covering genetic principles and information about CF and neonatal screening Questionnaire testing recall and opinions of the group Initial knowledge Recall of basic information about CF and of recessive inheritance Views about screening Knowledge of CF within the general community is low (less than 50% of respondents realised that CF affects the lungs and that no cure is available) 75% of the community sample indicated that they would like to be tested No consensus on the best time to offer screening Initial knowledge was low A good recall 86% considered that carrier detection should be offered routinely 88% felt that an offer of prenatal diagnosis should be made if both prospective parents were known to be carriers EL SU 3
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