ArticleJournal of medical genetics1997
The uptake and acceptability to patients of cystic fibrosis carrier testing offered in pregnancy by the GP.
Article in Journal of medical genetics, 1997. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 39 citations in OpenAlex.
- Cystic fibrosis prenatal screening in genetic counseling practice: recommendations of the National Society of Genetic Counselors.Journal of genetic counseling · 2005Guideline
- Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial.BMJ (Clinical research ed.) · 2010Trial
- Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature.Journal of community genetics · 2014Article
- Carrier screening in preconception consultation in primary care.Journal of community genetics · 2012Article
- Correlates of genetic counseling and testing among Orthodox Jews.Journal of religion and health · 2011Article
- Can we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing?Journal of genetic counseling · 2011Review
- Antenatal screening for haemoglobinopathies in primary care: a whole system participatory action research project.The British journal of general practice : the journal of the Royal College of General Practitioners · 2005Article
- Update and Review: Cystic Fibrosis.Journal of genetic counseling · 1999Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo determine the uptake and acceptability of cystic fibrosis (CF) carrier testing when offered to women at the first antenatal booking appointment by their general practitioner.
settingEight-general practices in the north west region with a combined patient list size of 42000.
designOffer of carrier screening at first antenatal booking appointment to pregnant women below 14 weeks' gestation; women accepting were alternately allocated to either couple testing (with full disclosure) or stepwise testing: SUBJECTS: Six hundred and twenty three women were offered CF carrier testing.
main outcome measures(1) Acceptance of the offer of CF carrier testing. (2) Acceptability of the test to women following screening, evaluated through (i) postal questionnaire, (ii) semistructured interview.
resultsFive hundred and twenty-nine (84.9%) women accepted the test; the level of uptake varied across the eight practices (range 11-99%). In 26/249 (10%) couple tests no paternal sample was provided. When asked what had influenced their decision to be tested, 59/377 (16%) women did not refer to CF in their answers and six (2%) said that they did not feel they could refuse the test. After receiving their results, 368/379 (97%) women felt that they had made the right decision to be tested, but two carriers and three non-carriers had felt unhappy about testing. Couple testing with full disclosure was associated with lower anxiety levels two weeks after receiving the result for the pregnancy than stepwise testing and 82/278 (29%) non-carriers believed that they had no residual risk in relation to CF.
conclusionsThe response from women accepting CF carrier testing was largely positive but a minority of women expressed concern about the test and the way it was offered and a substantial proportion of women were falsely reassured by their "negative" result. Higher levels of acceptance tended to occur in the practices which offered the test there and then rather than giving couples more time to decide about testing. Some women appeared to have accepted the test because of a belief in the importance of testing in pregnancy rather than because of the disease in question.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.