Literature DB >> 27038428

NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result.

Julie L Piechan1, Karrie A Hines2, Daniel L Koller3, Kristyne Stone2, Kimberly Quaid3, Wilfredo Torres-Martinez3, Divya Wilson Mathews4, Tatiana Foroud3, Lola Cook4.   

Abstract

Since becoming clinically available in 2011, the use of noninvasive prenatal testing (NIPT) to screen for fetal aneuploidy has continued to increase. However, it has been questioned whether the education of patients undergoing NIPT consistently meets informed consent standards. We sought to evaluate patients' basic understanding of NIPT, such as conditions assessed and accuracy. In addition, we investigated patient self-assessment of NIPT knowledge and satisfaction with the testing process. We distributed an anonymous paper survey to pregnant women during prenatal visits following a negative NIPT result. The survey assessed patient NIPT knowledge, gathered pregnancy-specific and demographic information, and allowed respondents to rank their basic understanding of NIPT and provide written feedback about the testing process. A total of 95 completed and 3 partially completed surveys were returned. Participants scored lowest on knowledge questions involving whether a negative NIPT result ensures a healthy baby or eliminates the possibility of Down syndrome. Most perceived themselves to have a good basic understanding of NIPT and two-thirds of the written feedback proposed no changes to NIPT administration. Overall, most patients appear satisfied with their understanding of NIPT and the testing process, yet they may not fully appreciate the limitations of this screening method.

Entities:  

Keywords:  Cell-free fetal DNA; Informed consent; Noninvasive prenatal screening; Noninvasive prenatal testing; Patient education; Patient knowledge; cffDNA

Mesh:

Year:  2016        PMID: 27038428     DOI: 10.1007/s10897-016-9945-x

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  41 in total

1.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

2.  Validation of targeted sequencing of single-nucleotide polymorphisms for non-invasive prenatal detection of aneuploidy of chromosomes 13, 18, 21, X, and Y.

Authors:  K H Nicolaides; A Syngelaki; M Gil; V Atanasova; D Markova
Journal:  Prenat Diagn       Date:  2013-04-24       Impact factor: 3.050

Review 3.  Use of cell-free fetal DNA in maternal plasma for noninvasive prenatal screening.

Authors:  Amy J Wagner; Michael E Mitchell; Aoy Tomita-Mitchell
Journal:  Clin Perinatol       Date:  2014-10-01       Impact factor: 3.430

4.  Do pregnant women in Greece make informed choices about antenatal screening for Down's syndrome? A questionnaire survey.

Authors:  Kleanthi Gourounti; Jane Sandall
Journal:  Midwifery       Date:  2007-02-20       Impact factor: 2.372

Review 5.  Committee Opinion No. 640: Cell-Free DNA Screening For Fetal Aneuploidy.

Authors: 
Journal:  Obstet Gynecol       Date:  2015-09       Impact factor: 7.661

6.  Noninvasive prenatal testing/noninvasive prenatal diagnosis: the position of the National Society of Genetic Counselors.

Authors:  Patricia L Devers; Amy Cronister; Kelly E Ormond; Flavia Facio; Campbell K Brasington; Pamela Flodman
Journal:  J Genet Couns       Date:  2013-01-22       Impact factor: 2.537

7.  What patients are reading about noninvasive prenatal testing: an evaluation of Internet content and implications for patient-centered care.

Authors:  M B Mercer; P K Agatisa; R M Farrell
Journal:  Prenat Diagn       Date:  2014-06-11       Impact factor: 3.050

8.  Noninvasive prenatal testing: impact on genetic counseling, invasive prenatal diagnosis, and trisomy 21 detection.

Authors:  Joseph R Wax; Angelina Cartin; Renée Chard; F Lee Lucas; Michael G Pinette
Journal:  J Clin Ultrasound       Date:  2014-10-09       Impact factor: 0.910

9.  Health literacy and patient understanding of screening tests for aneuploidy and neural tube defects.

Authors:  Regina N Cho; Beth A Plunkett; Michael S Wolf; Charla E Simon; William A Grobman
Journal:  Prenat Diagn       Date:  2007-05       Impact factor: 3.050

10.  Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy.

Authors:  Celine Lewis; Melissa Hill; Heather Skirton; Lyn S Chitty
Journal:  Eur J Hum Genet       Date:  2015-10-28       Impact factor: 4.246

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  17 in total

1.  Perspectives of Pregnant People and Clinicians on Noninvasive Prenatal Testing: A Systematic Review and Qualitative Meta-synthesis.

Authors:  Meredith Vanstone; Alexandra Cernat; Umair Majid; Forum Trivedi; Chanté De Freitas
Journal:  Ont Health Technol Assess Ser       Date:  2019-02-19

2.  Patterns of the utilization of prenatal diagnosis services among pregnant women, their satisfaction and its associated factors in Viet Nam.

Authors:  Duong Thi Thuy Doan; Huong Thi Thu Nguyen; Ha Thi Thu Bui
Journal:  Int J Public Health       Date:  2016-11-23       Impact factor: 3.380

3.  [France and Great-Britain at the age of genomic medicine: new ethical challenges in reproductive medicine].

Authors:  Ruth Horn
Journal:  Med Sci (Paris)       Date:  2019-02-18       Impact factor: 0.818

4.  Talking Points: Women's Information Needs for Informed Decision-Making About Noninvasive Prenatal Testing for Down Syndrome.

Authors:  Aimée C Dane; Madelyn Peterson; Yvette D Miller
Journal:  J Genet Couns       Date:  2018-03-17       Impact factor: 2.537

5.  Improving Patient Knowledge of Aneuploidy Testing Using an Educational Video: A Randomized Controlled Trial.

Authors:  Bethany M Mulla; Olivia H Chang; Anna M Modest; Michele R Hacker; Karen F Marchand; Karen E O'Brien
Journal:  Obstet Gynecol       Date:  2018-08       Impact factor: 7.661

Review 6.  Prenatal Diagnosis: Screening and Diagnostic Tools.

Authors:  Laura M Carlson; Neeta L Vora
Journal:  Obstet Gynecol Clin North Am       Date:  2017-06       Impact factor: 2.844

7.  A qualitative study looking at informed choice in the context of non-invasive prenatal testing for aneuploidy.

Authors:  Celine Lewis; Melissa Hill; Lyn S Chitty
Journal:  Prenat Diagn       Date:  2016-08-23       Impact factor: 3.050

8.  The clinical utility of DNA-based screening for fetal aneuploidy by primary obstetrical care providers in the general pregnancy population.

Authors:  Glenn E Palomaki; Edward M Kloza; Barbara M O'Brien; Elizabeth E Eklund; Geralyn M Lambert-Messerlian
Journal:  Genet Med       Date:  2017-01-12       Impact factor: 8.822

9.  Development and evaluation of training resources to prepare health professionals for counselling pregnant women about non-invasive prenatal testing for Down syndrome: a mixed methods study.

Authors:  Kerry Oxenford; Rebecca Daley; Celine Lewis; Melissa Hill; Lyn S Chitty
Journal:  BMC Pregnancy Childbirth       Date:  2017-04-27       Impact factor: 3.007

10.  Offering non-invasive prenatal testing as part of routine clinical service. Can high levels of informed choice be maintained?

Authors:  Celine Lewis; Melissa Hill; Lyn S Chitty
Journal:  Prenat Diagn       Date:  2017-10-17       Impact factor: 3.050

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