Korean J Women Health Nurs.  2022 Sep;28(3):235-249. 10.4069/kjwhn.2022.09.10.

Informed choice of pregnant women regarding noninvasive prenatal testing in Korea: a cross-sectional study

Affiliations
  • 1College of Nursing and Research Institute of Nursing Science, Kyungpook National University, Daegu, KoreaCollege of Nursing and Research Institute of Nursing Science, Kyungpook National University, Daegu, Korea

Abstract

Purpose
This study explored the degree to which pregnant women in Korea made informed choices regarding noninvasive prenatal testing (NIPT) and investigated factors influencing whether they made informed choices. Methods: In total, 129 pregnant women in Korea participated in a web-based survey. Multidimensional measures of informed choice regarding NIPT and decisional conflict were used to measure participants’ levels of knowledge, attitudes, deliberation, uptake, and decisional conflict related to NIPT. Additional questions were asked about participants’ NIPT experiences and opinions. Results: All 129 pregnant women were recruited from an online community. Excluding those who expressed neutral attitudes toward NIPT, according to the definition of informed choice used in this study, only 91 made an informed choice (n=63, 69.2%) or an uninformed choice (n=28, 30.8%). Of the latter, 75.0% had insufficient knowledge, 39.3% made a value-inconsistent decision, and 14.3% did not deliberate sufficiently. No difference in decisional conflict was found between the two groups. A significant difference was found between the two groups in the reasons why NIPT was introduced or recommended (p=.021). Multiple logistic regression analysis showed that pregnant women who were knowledgeable (odds ratio [OR], 4.77; 95% confidence interval [CI], 2.17– 10.47) and deliberated (OR, 0.74; 95% CI, 0.57–0.98) were significantly more likely to make an informed choice. Conclusion: The results of this study help healthcare providers, including nurses in maternity units, understand pregnant women’s experiences of NIPT. Counseling strategies are needed to improve pregnant women’s knowledge of NIPT and create an environment that promotes deliberation regarding this decision.

Keyword

Cell-free DNA; conflict, psychological; Counseling; Decision making; Prenatal care

Reference

References

1. MedlinePlus. What is noninvasive prenatal testing (NIPT) and what disorders can it screen for? [Internet]. Bethesda, MD: Author; 2021 [cited 2022 Jan 21]. Available from: https://medlineplus.gov/genetics/understanding/testing/nipt/.
2. Taylor-Phillips S, Freeman K, Geppert J, Agbebiyi A, Uthman OA, Madan J, et al. Accuracy of non-invasive prenatal testing using cell-free DNA for detection of Down, Edwards and Patau syndromes: a systematic review and meta-analysis. BMJ Open. 2016; 6(1):e010002. https://doi.org/10.1136/bmjopen-2015-010002.
Article
3. Noh JJ, Ryu HM, Oh SY, Choi SJ, Roh CR, Kim JH. A two-year experience of non-invasive prenatal testing (NIPT) at an urban tertiary medical center in South Korea. Taiwan J Obstet Gynecol. 2019; 58(4):545–551. https://doi.org/10.1016/j.tjog.2019.05.021.
Article
4. Dupras C, Birko S, Affdal A, Haidar H, Lemoine ME, Ravitsky V. Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study. CMAJ Open. 2018; 6(4):E513–E519. https://doi.org/10.9778/cmajo.20180083.
Article
5. Allyse M, Minear MA, Berson E, Sridhar S, Rote M, Hung A, et al. Non-invasive prenatal testing: a review of international implementation and challenges. Int J Womens Health. 2015; 7:113–126. https://doi.org/10.2147/IJWH.S67124.
Article
6. Choe SA, Kim K, Seol HJ, Lee JY, Kim MA, Kim M, et al. Clinical practice guidelines for prenatal aneuploidy screening and diagnostic testing from Korean society of maternal-fetal medicine: (2) Cell-free DNA screening. J Korean Med Sci. 2020; 35(40):e326. https://doi.org/10.3346/jkms.2020.35.e326.
Article
7. Korean Statistical Information Service. Fertility rate by maternal age (1999-2019) [Internet]. Daejeon: Author; 2020 accessed 2020 Aug 8; [cited 2022 Jan 21]. Available from: https://kosis.kr/statHtml/statHtml.do?orgId=101&tblId=DT_1B81A21&conn_path=I2. Updated 2020.
8. Musci TJ, Fairbrother G, Batey A, Bruursema J, Struble C, Song K. Non-invasive prenatal testing with cell-free DNA: US physician attitudes toward implementation in clinical practice. Prenat Diagn. 2013; 33(5):424–428. https://doi.org/10.1002/pd.4091.
Article
9. Mikamo S, Nakatsuka M. Knowledge and attitudes toward non-invasive prenatal testing among pregnant Japanese women. Acta Med Okayama. 2015; 69(3):155–163. https://doi.org/10.18926/AMO/53522.
Article
10. Allyse M, Sayres LC, Goodspeed TA, Cho MK. Attitudes towards non-invasive prenatal testing for aneuploidy among US adults of reproductive age. J Perinatol. 2014; 34(6):429–434. https://doi.org/10.1038/jp.2014.30.
Article
11. van Schendel RV, Kater-Kuipers A, van Vliet-Lachotzki EH, Dondorp WJ, Cornel MC, Henneman L. What do parents of children with Down syndrome think about non-invasive prenatal testing (NIPT)? J Genet Couns. 2017; 26(3):522–531. https://doi.org/10.1007/s10897-016-0012-4.
Article
12. Vanstone M, Cernat A, Majid U, Trivedi F, De Freitas C. Perspectives of pregnant people and clinicians on noninvasive prenatal testing: a systematic review and qualitative meta-synthesis. Ont Health Technol Assess Ser. 2019; 19(5):1–38.
13. Cernat A, De Freitas C, Majid U, Trivedi F, Higgins C, Vanstone M. Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women's experiences. BMC Pregnancy Childbirth. 2019; 19(1):27. https://doi.org/10.1186/s12884-018-2168-4.
Article
14. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect. 2001; 4(2):99–108. https://doi.org/10.1046/j.1369-6513.2001.00140.x.
Article
15. Lewis C, Hill M, Skirton H, Chitty LS. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. Eur J Hum Genet. 2016; 24(6):809–816. https://doi.org/10.1038/ejhg.2015.207.
Article
16. Yu L, Yang S, Zhang C, Guo P, Zhang X, Xu M, et al. Decision aids for prenatal testing: a systematic review and meta-analysis. J Adv Nurs. 2021; 77(10):3964–3979. https://doi.org/10.1111/jan.14875.
Article
17. O’Connor AM. Validation of a decisional conflict scale. Med Decis Making. 1995; 15(1):25–30. https://doi.org/10.1177/0272989X9501500105.
Article
18. O’Connor AM. User manual-decisional conflict scale [Internet]. Ottawa: Ottawa Hospital Research Institute; 1993 updated 2010; [cited 2022 Jul 30]. Available from: http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf.
19. Lewis C, Hill M, Chitty LS. Women’s experiences and preferences for service delivery of non-invasive prenatal testing for aneuploidy in a public health setting: a mixed methods study. PLoS One. 2016; 11(4):e0153147. https://doi.org/10.1371/journal.pone.0153147.
Article
20. International Society of Nurses in Genetics. What is a genetics nurse? [Internet]. Pittsburgh, PA: Author; 2020 [cited 2022 May 9]. Available from: https://www.isong.org/page-1325153.
21. Heck LO, Carrara BS, Mendes IA, Arena Ventura CA. Nursing and advocacy in health: an integrative review. Nurs Ethics. 2022; 29(4):1014–1034. https://doi.org/10.1177/09697330211062981.
Article
22. Jun M, Shin G, Hur MH, Choi KS. Reviewing articles related to recent advances in non-invasive prenatal testing and nursing implications. J Korean Acad Soc Nurs Educ. 2013; 19(4):675–683. https://doi.org/10.5977/jkasne.2013.19.4.675.
Article
23. Kim SH, Kim KW, Han YJ, Lee SM, Lee MY, Shim JY, et al. Korean physicians’ attitudes toward the prenatal screening for fetal aneuploidy and implementation of non-invasive prenatal testing with cell-free fetal DNA. J Genet Med. 2018; 15(2):72–78. https://doi.org/10.5734/JGM.2018.15.2.72.
Article
24. van Gelder MM, Bretveld RW, Roeleveld N. Web-based questionnaires: the future in epidemiology? Am J Epidemiol. 2010; 172(11):1292–1298. https://doi.org/10.1093/aje/kwq291.
Article
25. Statistics Korea. Internet (OECD) [Internet]. Seoul: Author; 2021 [cited 2022 Sep 9]. Available from: https://kosis.kr/statHtml/statHtml.do?orgId=101&tblId=DT_2KAAA13_OECD.
26. Beulen L, van den Berg M, Faas BH, Feenstra I, Hageman M, van Vugt JM, Bekker MN. The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial. Eur J Hum Genet. 2016; 24(10):1409–1416. https://doi.org/10.1038/ejhg.2016.39.
Article
27. World Health Organization. WHODAS 2.0 translation package (version 1.0): Translation and linguistic evaluation protocol and supporting material [Internet]. Geneva: Author; 2012 [cited 2022 Sep 9]. https://terrance.who.int/mediacentre/data/WHODAS/Guidelines/WHODAS%202.0%20Translation%20guidelines.pdf.
28. Shi J, Mo X, Sun Z. Content validity index in scale development. Zhong Nan Da Xue Xue Bao Yi Xue Ban. 2012; 37(2):152–155. https://doi.org/10.3969/j.issn.1672-7347.2012.02.007.
Article
29. Yun YH, Lee MK, Park S, Lee JL, Park J, Choi YS, et al. Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: a randomized controlled trial. J Clin Oncol. 2011; 29(36):4811–4819. https://doi.org/10.1200/JCO.2011.35.3870.
Article
30. Cornell P, Armstrong T, Fyfe R, Mallise CA, Dudding-Byth T, Campbell LE. Experiences of non-invasive prenatal screening: a survey study. Aust N Z J Obstet Gynaecol. 2022; 62(2):241–249. https://doi.org/10.1111/ajo.13436.
Article
31. Lewis C, Hill M, Chitty LS. Offering non-invasive prenatal testing as part of routine clinical service. Can high levels of informed choice be maintained? Prenat Diagn. 2017; 37(11):1130–1137. https://doi.org/10.1002/pd.5154.
Article
32. Lee CH, Lim H, Kim Y, Park AH, Park EC, Kang JG. Analysis of appropriate outpatient consultation time for clinical departments. Health Policy Manag. 2014; 24(3):254–260. https://doi.org/10.4332/KJHPA.2014.24.3.254.
Article
33. Dane AC, Peterson M, Miller YD. Talking points: women's information needs for informed decision-making about noninvasive prenatal testing for Down syndrome. J Genet Couns. 2018; 27(5):1258–1264. https://doi.org/10.1007/s10897-018-0250-8.
Article
34. van der Meij KR, Njio A, Martin L, Gitsels-van der Wal JT, Bekker MN, van Vliet-Lachotzki EH, et al. Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives. Eur J Hum Genet. 2022; 30(6):661–668. https://doi.org/10.1038/s41431-021-00940-8.
Article
35. van Schendel RV, Page-Christiaens GC, Beulen L, Bilardo CM, de Boer MA, Coumans AB, et al. Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part II-women’s perspectives. Prenat Diagn. 2016; 36(12):1091–1098. https://doi.org/10.1002/pd.4941.
Article
36. Smith SK, Cai A, Wong M, Sousa MS, Peate M, Welsh A, et al. Improving women’s knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid. BMC Pregnancy Childbirth. 2018; 18(1):499. https://doi.org/10.1186/s12884-018-2135-0.
Article
37. Silcock C, Liao LM, Hill M, Chitty LS. Will the introduction of non-invasive prenatal testing for Down's syndrome undermine informed choice? Health Expect. 2015; 18(5):1658–1671. https://doi.org/10.1111/hex.12159.
Article
38. Laberge AM, Birko S, Lemoine MÈ, Le Clerc-Blain J, Haidar H, Affdal AO, et al. Canadian pregnant women's preferences regarding NIPT for Down syndrome: the information they want, how they want to get it, and with whom they want to discuss it. J Obstet Gynaecol Can. 2019; 41(6):782–791. https://doi.org/10.1016/j.jogc.2018.11.003.
Article
39. Oepkes D, Yaron Y, Kozlowski P, Rego de Sousa MJ, Bartha JL, van den Akker ES, et al. Counseling for non-invasive prenatal testing (NIPT): what pregnant women may want to know. Ultrasound Obstet Gynecol. 2014; 44(1):1–5. https://doi.org/10.1002/uog.13394.
Article
40. van der Meij KR, Kooij C, Bekker MN, Galjaard RH, Henneman L; Dutch NIPT Consortium. Non-invasive prenatal test uptake in socioeconomically disadvantaged neighborhoods. Prenat Diagn. 2021; 41(11):1395–1400. https://doi.org/10.1002/pd.6043.
Article
41. Kim NH. Prenatal deformity screening NIPT: looking at the medical expenses, regional differences are 'clear' [Internet]. Seoul: Medical Observer: 2021 [cited 2022 May 10]. Available from: http://www.monews.co.kr/news/articleView.html?idxno=307476.
42. Gadsbøll K, Petersen OB, Gatinois V, Strange H, Jacobsson B, Wapner R, et al. Current use of noninvasive prenatal testing in Europe, Australia and the USA: a graphical presentation. Acta Obstet Gynecol Scand. 2020; 99(6):722–730. https://doi.org/10.1111/aogs.13841.
Article
43. Schöne-Seifert B, Junker C. Making use of non-invasive prenatal testing (NIPT): rethinking issues of routinization and pressure. J Perinat Med. 2021; 49(8):959–964. https://doi.org/10.1515/jpm-2021-0236.
Article
44. Choi A, Park YW, Kim SK, Kim SC, Lee PR, Hwang KJ, et al. Medical issues and opinions of obstetrics regarding abortion law amendment. J Korean Soc Matern Child Health. 2020; 24(1):9–17. https://doi.org/10.21896/jksmch.2020.24.1.9.
Article
Full Text Links
  • KJWHN
Actions
Cited
CITED
export Copy
Close
Share
  • Twitter
  • Facebook
Similar articles
Copyright © 2024 by Korean Association of Medical Journal Editors. All rights reserved.     E-mail: koreamed@kamje.or.kr