Literature DB >> 21416590

An interactive computer program can effectively educate potential users of cystic fibrosis carrier tests.

Carlo Castellani1, Sandra Perobelli, Vera Bianchi, Manuela Seia, Paola Melotti, Luisa Zanolla, Baroukh Maurice Assael, Faustina Lalatta.   

Abstract

The demand for cystic fibrosis (CF) carrier testing is steadily growing, not only from individuals with raised a priori carrier risk, but also from the general population. This trend will likely exceed the availability of genetic counselors, making it impossible to provide standard face-to-face genetic counseling to all those asking for the test. In order to reduce the time needed to educate individuals on the basics of the disease, its genetic transmission, and carrier testing peculiarities, we developed an educational method based on an interactive computer program (IC). To assess the effectiveness of this program and to compare it to a classical genetic counseling session, we conducted a comparative trial. In a population setting of people undergoing assisted reproduction, 44 individuals were randomly assigned to either receiving standard one-on-one genetic counseling or education by the IC program. We measured pre- and post-intervention knowledge about CF genetic transmission and carrier testing. Starting from an equivalent baseline of correct answers to a specially designed multiple-choice questionnaire (47% in the counselor group and 45% in the computer group) both groups showed a highly significant and similar increase (reaching 84% in the counselor group and 85% in the computer group). The computer program under evaluation can successfully educate individuals considering genetic testing for CF.
Copyright © 2011 Wiley-Liss, Inc.

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Year:  2011        PMID: 21416590     DOI: 10.1002/ajmg.a.33870

Source DB:  PubMed          Journal:  Am J Med Genet A        ISSN: 1552-4825            Impact factor:   2.802


  7 in total

1.  Creation of a National, At-home Model for Ashkenazi Jewish Carrier Screening.

Authors:  Karen Arnovitz Grinzaid; Patricia Zartman Page; Jessica Johnson Denton; Jessica Ginsberg
Journal:  J Genet Couns       Date:  2014-12-12       Impact factor: 2.537

Review 2.  A Systematic Review of Randomized Controlled Trials to Assess Outcomes of Genetic Counseling.

Authors:  Barbara A Athens; Samantha L Caldwell; Kendall L Umstead; Philip D Connors; Ethan Brenna; Barbara B Biesecker
Journal:  J Genet Couns       Date:  2017-03-02       Impact factor: 2.537

3.  Online Module for Carrier Screening in Ashkenazi Jewish Individuals Compared with In-Person Genetics Education: A Randomized Controlled Trial.

Authors:  Chia Wei Fan; Lysanne Castonguay; Sonja Rummell; Sébastien Lévesque; John J Mitchell; Guillaume Sillon
Journal:  J Genet Couns       Date:  2017-08-09       Impact factor: 2.537

Review 4.  Digital health-enabled genomics: Opportunities and challenges.

Authors:  Yvonne Bombard; Geoffrey S Ginsburg; Amy C Sturm; Alicia Y Zhou; Amy A Lemke
Journal:  Am J Hum Genet       Date:  2022-07-07       Impact factor: 11.043

5.  DECIDE: a Decision Support Tool to Facilitate Parents' Choices Regarding Genome-Wide Sequencing.

Authors:  Patricia Birch; S Adam; N Bansback; R R Coe; J Hicklin; A Lehman; K C Li; J M Friedman
Journal:  J Genet Couns       Date:  2016-05-23       Impact factor: 2.537

Review 6.  The future of cystic fibrosis care: a global perspective.

Authors:  Scott C Bell; Marcus A Mall; Hector Gutierrez; Milan Macek; Susan Madge; Jane C Davies; Pierre-Régis Burgel; Elizabeth Tullis; Claudio Castaños; Carlo Castellani; Catherine A Byrnes; Fiona Cathcart; Sanjay H Chotirmall; Rebecca Cosgriff; Irmgard Eichler; Isabelle Fajac; Christopher H Goss; Pavel Drevinek; Philip M Farrell; Anna M Gravelle; Trudy Havermans; Nicole Mayer-Hamblett; Nataliya Kashirskaya; Eitan Kerem; Joseph L Mathew; Edward F McKone; Lutz Naehrlich; Samya Z Nasr; Gabriela R Oates; Ciaran O'Neill; Ulrike Pypops; Karen S Raraigh; Steven M Rowe; Kevin W Southern; Sheila Sivam; Anne L Stephenson; Marco Zampoli; Felix Ratjen
Journal:  Lancet Respir Med       Date:  2019-09-27       Impact factor: 30.700

Review 7.  Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.

Authors:  Norita Hussein; Stephen F Weng; Joe Kai; Jos Kleijnen; Nadeem Qureshi
Journal:  Cochrane Database Syst Rev       Date:  2018-03-14
  7 in total

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