Literature DB >> 7611285

Teaching about cystic fibrosis carrier screening by using written and video information.

E W Clayton1, V L Hannig, J P Pfotenhauer, R A Parker, P W Campbell, J A Phillips.   

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.

Entities:  

Keywords:  Genetics and Reproduction

Mesh:

Year:  1995        PMID: 7611285      PMCID: PMC1801248     

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.025


  11 in total

1.  The cystic fibrosis gene: medical and social implications for heterozygote detection.

Authors:  Benjamin S Wilfond; Norman Fost
Journal:  JAMA       Date:  1990 May 23-30       Impact factor: 56.272

2.  Couple screening for cystic fibrosis.

Authors:  N J Wald
Journal:  Lancet       Date:  1991-11-23       Impact factor: 79.321

3.  The American Society of Human Genetics statement on cystic fibrosis screening.

Authors:  C T Caskey; M M Kaback; A L Beaudet
Journal:  Am J Hum Genet       Date:  1990-02       Impact factor: 11.025

4.  Reporting the results of cystic fibrosis carrier screening.

Authors:  D A Asch; J P Patton; J C Hershey; M T Mennuti
Journal:  Am J Obstet Gynecol       Date:  1993-01       Impact factor: 8.661

5.  Primary care physicians as providers of frontline genetic services.

Authors:  N A Holtzman
Journal:  Fetal Diagn Ther       Date:  1993-04       Impact factor: 2.587

6.  Involving consumers in the development of an educational program for cystic fibrosis carrier screening.

Authors:  M F Myers; B A Bernhardt; E S Tambor; N A Holtzman
Journal:  Am J Hum Genet       Date:  1994-04       Impact factor: 11.025

7.  The impact of population based screening for carriers of cystic fibrosis.

Authors:  H Bekker; G Denniss; M Modell; M Bobrow; T Marteau
Journal:  J Med Genet       Date:  1994-05       Impact factor: 6.318

8.  Preventing AIDS and other STDs through condom promotion: a patient education intervention.

Authors:  M Z Solomon; W DeJong
Journal:  Am J Public Health       Date:  1989-04       Impact factor: 9.308

9.  Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive?

Authors:  G Geller; E S Tambor; G A Chase; K J Hofman; R R Faden; N A Holtzman
Journal:  Arch Fam Med       Date:  1993-11

10.  Carrier testing for cystic fibrosis: knowledge and attitudes within a local community.

Authors:  D Magnay; O Wilson; S el Hait; M Balhamar; J Burn
Journal:  J R Coll Physicians Lond       Date:  1992-01
View more
  11 in total

1.  Cystic fibrosis carrier population screening in the primary care setting.

Authors:  S Loader; P Caldwell; A Kozyra; J C Levenkron; C D Boehm; H H Kazazian; P T Rowley
Journal:  Am J Hum Genet       Date:  1996-07       Impact factor: 11.025

2.  Experiences among Women with Positive Prenatal Expanded Carrier Screening Results.

Authors:  Erin Rothwell; Erin Johnson; Amber Mathiesen; Kylie Golden; Audrey Metcalf; Nancy C Rose; Jeffrey R Botkin
Journal:  J Genet Couns       Date:  2016-10-29       Impact factor: 2.537

3.  Update and Review: Cystic Fibrosis.

Authors:  T Brown; E L Schwind
Journal:  J Genet Couns       Date:  1999-06       Impact factor: 2.537

4.  Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screening.

Authors:  Liane Ioannou; John Massie; Sharon Lewis; Veronica Collins; Belinda McClaren; Martin B Delatycki
Journal:  Eur J Hum Genet       Date:  2013-11-20       Impact factor: 4.246

5.  Evaluation of a project to enhance knowledge of hereditary diseases and management.

Authors:  I R Walpole; C Watson; D Moore; J Goldblatt; C Bower
Journal:  J Med Genet       Date:  1997-10       Impact factor: 6.318

6.  Development of an evidence-based information booklet to support parents of children without a diagnosis.

Authors:  Celine Lewis; Heather Skirton; Ray Jones
Journal:  J Genet Couns       Date:  2012-04-21       Impact factor: 2.537

7.  Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening.

Authors:  E W Clayton; V L Hannig; J P Pfotenhauer; R A Parker; P W Campbell; J A Phillips
Journal:  Am J Hum Genet       Date:  1996-03       Impact factor: 11.025

8.  Information management in families who have a child with a genetic condition.

Authors:  Agatha M Gallo; Kathleen A Knafl; Denise B Angst
Journal:  J Pediatr Nurs       Date:  2009-06       Impact factor: 2.145

9.  Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs.

Authors:  Kathryn T Hock; Kurt D Christensen; Beverly M Yashar; J Scott Roberts; Sarah E Gollust; Wendy R Uhlmann
Journal:  Genet Med       Date:  2011-04       Impact factor: 8.822

10.  Development and Initial Assessment of a Patient Education Video about Pharmacogenetics.

Authors:  Rachel Mills; Megan Ensinger; Nancy Callanan; Susanne B Haga
Journal:  J Pers Med       Date:  2017-05-25
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.