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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