Trial reportAmerican journal of human genetics1995
Teaching about cystic fibrosis carrier screening by using written and video information.
Trial report in American journal of human genetics, 1995. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 53 citations in OpenAlex.
- Psychological interventions for individuals with cystic fibrosis and their families.The Cochrane database of systematic reviews · 2014Pooled it
- Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screening.European journal of human genetics : EJHG · 2014Trial
- Cystic fibrosis carrier population screening in the primary care setting.American journal of human genetics · 1996Trial
- Preconception expanded carrier screening: Impact of information presented by text or video on genetic knowledge and attitudes.Journal of genetic counseling · 2021Article
- Experiences among Women with Positive Prenatal Expanded Carrier Screening Results.Journal of genetic counseling · 2017Article
- Development and Initial Assessment of a Patient Education Video about Pharmacogenetics.Journal of personalized medicine · 2017Article
- Development of an evidence-based information booklet to support parents of children without a diagnosis.Journal of genetic counseling · 2012Article
- Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs.Genetics in medicine : official journal of the American College of Medical Genetics · 2011Article
- Information management in families who have a child with a genetic condition.Journal of pediatric nursing · 2009Article
- Update and Review: Cystic Fibrosis.Journal of genetic counseling · 1999Article
- Evaluation of a project to enhance knowledge of hereditary diseases and management.Journal of medical genetics · 1997Article
- Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening.American journal of human genetics · 1996Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
We performed two studies using only written and video materials to educate people about cystic fibrosis (CF) and carrier screening. Participants were randomized to receive written or video materials. All received a brief questionnaire. Subjects in group I (n = 238) were (1) individuals in steady relationships and their partners, (2) > or = 18 years old, and (3) not pregnant. Those who accepted free screening and were not demonstrable carriers were sent a letter explaining their results and another questionnaire. Subjects in group II (n = 108) were parents seeking well child care in a university clinic. The main outcome measures were ability to answer questions correctly about (1) health status of CF carriers and people with CF, (2) the possibility of false-negative results, and (3) for those who had screening, the implications of their own results. Written and video materials were equally effective in conveying information. Prior to screening, subjects answered an average of 86% of questions correctly. Subjects with less formal education answered fewer questions correctly; 60% of those with less than a high school education had adequate knowledge of the health consequences of having CF or being a carrier, compared with > or = 94% of college graduates. Performance improved after screening. Where neither partner was a demonstrable carrier, 88% knew their own and their partner's test results, and 90% indicated that their risk of having a child with CF was not zero. Written and video educational materials can be used without face-to-face counseling to inform most people about carrier screening and their test results. These materials may be less effective for those with lower educational backgrounds.
Indexed as
Identifiers
7611285PMC1801248W2198969127What OpenQuestion holds
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.