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

Julie L. Piechan, Karrie A. Hines, Daniel L. Koller, Kristyne Stone, Kimberly Quaid, Wilfredo Torres-Martinez, Divya Wilson Mathews, Tatiana Foroud, Lola Cook

Research output: Contribution to journalArticle

18 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1-11
Number of pages11
JournalJournal of Genetic Counseling
DOIs
StateAccepted/In press - Apr 1 2016

Fingerprint

Informed Consent
Aneuploidy
Patient Education
Down Syndrome
Pregnant Women
Demography
Pregnancy
Surveys and Questionnaires

Keywords

  • Cell-free fetal DNA
  • cffDNA
  • Informed consent
  • Noninvasive prenatal screening
  • Noninvasive prenatal testing
  • Patient education
  • Patient knowledge

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Piechan, J. L., Hines, K. A., Koller, D. L., Stone, K., Quaid, K., Torres-Martinez, W., ... Cook, L. (Accepted/In press). NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result. Journal of Genetic Counseling, 1-11. https://doi.org/10.1007/s10897-016-9945-x

NIPT and Informed Consent : an Assessment of Patient Understanding of a Negative NIPT Result. / Piechan, Julie L.; Hines, Karrie A.; Koller, Daniel L.; Stone, Kristyne; Quaid, Kimberly; Torres-Martinez, Wilfredo; Wilson Mathews, Divya; Foroud, Tatiana; Cook, Lola.

In: Journal of Genetic Counseling, 01.04.2016, p. 1-11.

Research output: Contribution to journalArticle

Piechan, JL, Hines, KA, Koller, DL, Stone, K, Quaid, K, Torres-Martinez, W, Wilson Mathews, D, Foroud, T & Cook, L 2016, 'NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result', Journal of Genetic Counseling, pp. 1-11. https://doi.org/10.1007/s10897-016-9945-x
Piechan, Julie L. ; Hines, Karrie A. ; Koller, Daniel L. ; Stone, Kristyne ; Quaid, Kimberly ; Torres-Martinez, Wilfredo ; Wilson Mathews, Divya ; Foroud, Tatiana ; Cook, Lola. / NIPT and Informed Consent : an Assessment of Patient Understanding of a Negative NIPT Result. In: Journal of Genetic Counseling. 2016 ; pp. 1-11.
@article{8d0c42eff5d64d67883c2bd074766854,
title = "NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result",
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.",
keywords = "Cell-free fetal DNA, cffDNA, Informed consent, Noninvasive prenatal screening, Noninvasive prenatal testing, Patient education, Patient knowledge",
author = "Piechan, {Julie L.} and Hines, {Karrie A.} and Koller, {Daniel L.} and Kristyne Stone and Kimberly Quaid and Wilfredo Torres-Martinez and {Wilson Mathews}, Divya and Tatiana Foroud and Lola Cook",
year = "2016",
month = "4",
day = "1",
doi = "10.1007/s10897-016-9945-x",
language = "English (US)",
pages = "1--11",
journal = "Journal of Genetic Counseling",
issn = "1059-7700",
publisher = "Kluwer Academic/Human Sciences Press Inc.",

}

TY - JOUR

T1 - NIPT and Informed Consent

T2 - an Assessment of Patient Understanding of a Negative NIPT Result

AU - Piechan, Julie L.

AU - Hines, Karrie A.

AU - Koller, Daniel L.

AU - Stone, Kristyne

AU - Quaid, Kimberly

AU - Torres-Martinez, Wilfredo

AU - Wilson Mathews, Divya

AU - Foroud, Tatiana

AU - Cook, Lola

PY - 2016/4/1

Y1 - 2016/4/1

N2 - 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.

AB - 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.

KW - Cell-free fetal DNA

KW - cffDNA

KW - Informed consent

KW - Noninvasive prenatal screening

KW - Noninvasive prenatal testing

KW - Patient education

KW - Patient knowledge

UR - http://www.scopus.com/inward/record.url?scp=84962177644&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84962177644&partnerID=8YFLogxK

U2 - 10.1007/s10897-016-9945-x

DO - 10.1007/s10897-016-9945-x

M3 - Article

C2 - 27038428

AN - SCOPUS:84962177644

SP - 1

EP - 11

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

SN - 1059-7700

ER -