Top

Published in:

01-10-2018 | Original Research

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

Published in: Journal of Genetic Counseling | Issue 5/2018

Abstract

Adequate knowledge is a vital component of informed decision-making; however, we do not know what information women value when making decisions about noninvasive prenatal testing (NIPT). The current study aimed to identify women’s information needs for decision-making about NIPT as a first-tier, non-contingent test with out-of-pocket expense and, in turn, inform best practice by specifying the information that should be prioritized when providing pre-test counseling to women in a time-limited scenario or space-limited decision support tool. We asked women (N = 242) in Australia to indicate the importance of knowing 24 information items when making a decision about NIPT and to choose two information items they would most value. Our findings suggest that women value having complete information when making decisions about NIPT. Information about the accuracy of NIPT and the pros and cons of NIPT compared to other screening and invasive tests were perceived to be most important. The findings of this study can be used to maximize the usefulness of time-limited discussions or space-limited decision support tools, but should not be routinely relied upon as a replacement for provision of full and tailored information when feasible.

ACOG. (2015). Cell-free DNA screening for fetal aneuploidy. Committee Opinion No. 640. Obstetrics & Gynecology, 126(3), e31–e37.CrossRef

Allyse, M., Minear, M. A., Berson, E., Sridhar, S., Rote, M., Hung, A., & Chandrasekharan, S. (2015). Non-invasive prenatal testing: a review of international implementation and challenges. International Journal of Women’s Health, 7, 113–126. https://doi.org/10.2147/IJWH.S67124.CrossRefPubMedPubMedCentral

Allyse, M., Sayres, L., Havard, M., King, J., Greely, H., Hudgins, L., et al. (2013). Best ethical practices for clinicians and laboratories in the provision of non-invasive prenatal testing. Prenatal Diagnosis, 33(7), 656–661.CrossRefPubMedPubMedCentral

Barrett, A. N., Advani, H. V., Chitty, L. S., Su, L. L., Biswas, A., Tan, W. C., et al. (2016). Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome. Singapore Medical Journal. https://doi.org/10.11622/smedj.2016114.CrossRefPubMedPubMedCentral

Beulen, L., van den Berg, M., Faas, B. H., Feenstra, I., Hageman, M., van Vugt, J. M., & Bekker, M. N. (2016). The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial. European Journal of Human Genetics, 24(10), 1409–1416.CrossRefPubMedPubMedCentral

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.CrossRef

Bryant, L. D., Green, J. M., & Hewison, J. (2010). The role of attitudes towards the targets of behaviour in predicting and informing prenatal testing choices. Psychology & Health, 25(10), 1175–1194.CrossRef

Drennan, J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57–63.CrossRefPubMed

Farrell, R. M., Agatisa, P. K., & Nutter, B. (2014a). What women want: lead considerations for current and future applications of noninvasive prenatal testing in prenatal care. Birth, 41(3), 276–282.CrossRefPubMedPubMedCentral

Farrell, R. M., Mercer, M. B., Agatisa, P. K., Smith, M. B., & Philipson, E. (2014b). It’s more than a blood test: patients’ perspectives on noninvasive prenatal testing. Journal of Clinical Medicine, 3(2), 614–631.CrossRefPubMedPubMedCentral

Farrell, R. M., Nutter, B., & Agatisa, P. K. (2011). Meeting patients’ education and decision-making needs for first trimester prenatal aneuploidy screening. Prenatal Diagnosis, 31(13), 1222–1228.CrossRefPubMed

Hill, M., Wright, D., Daley, R., Lewis, C., McKay, F., Mason, S., Lench, N., Howarth, A., Boustred, C., Lo, K., Plagnol, V., Spencer, K., Fisher, J., Kroese, M., Morris, S., & Chitty, L. S. (2014). Evaluation of non-invasive prenatal testing (NIPT) for aneuploidy in an NHS setting: a reliable accurate prenatal non-invasive diagnosis (RAPID) protocol. BMC Pregnancy and Childbirth, 14(229). https://doi.org/10.1186/1471-2393-14-229.

Kuppermann, M., Pena, S., Bishop, J. T., Nakagawa, S., Gregorich, S. E., Sit, A., Vargas, J., Caughey, A. B., Sykes, S., Pierce, L., & Norton, M. E. (2014). Effect of enhanced information, values clarification, and removal of financial barriers on use of prenatal genetic testing: a randomized clinical trial. JAMA, 312(12), 1210–1217.CrossRefPubMedPubMedCentral

Lewis, C., Hill, M., & Chitty, L. S. (2017). Offering non-invasive prenatal testing as part of routine clinical service. Can high levels of informed choice be maintained? Prenatal Diagnosis, 37, 1130–1137. https://doi.org/10.1002/pd.5154.CrossRefPubMedPubMedCentral

Lewis, C., Hill, M., Skirton, H., & Chitty, L. S. (2016). Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. European Journal of Human Genetics, 24(6), 809–816.CrossRefPubMed

Lewis, C., Silcock, C., & Chitty, L. S. (2013). Non-invasive prenatal testing for Down’s syndrome: pregnant women’s views and likely uptake. Public Health Genomics, 16(5), 223–232.CrossRefPubMed

Marteau, T. M., & Dormandy, E. (2001). Facilitating informed choice in prenatal testing: how well are we doing? American Journal of Medical Genetics, 106(3), 185–190.CrossRefPubMed

Marteau, T. M., Dormandy, E., & Michie, S. (2001). A measure of informed choice. Health Expectations, 4(2), 99–108.CrossRefPubMedPubMedCentral

Michie, S., Dormandy, E., & Marteau, T. M. (2003). Informed choice: understanding knowledge in the context of screening uptake. Patient Education and Counseling, 50(3), 247–253.CrossRefPubMed

Nagle, C., Gunn, J., Bell, R., Lewis, S., Meiser, B., Metcalfe, S., Ukoumunne, O. C., & Halliday, J. (2008). Use of a decision aid for prenatal testing of fetal abnormalities to improve women’s informed decision making: a cluster randomised controlled trial. BJOG, 115(3), 339–347.CrossRefPubMed

Nicolaides, K. H. (2004). Nuchal translucency and other first-trimester sonographic markers of chromosomal abnormalities. American Journal of Obstetrics & Gynecology, 191(1), 45–67.CrossRef

Piechan, J. L., Hines, K. A., Koller, D. L., 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, 25, 1127–1137.CrossRefPubMed

RANZCOG, College statement C-Obs 59: prenatal screening and diagnosis of chromosomal and genetic abnormalities in the fetus in pregnancy, 2015.

Sachs, A., Blanchard, L., Buchanan, A., Norwitz, E., & Bianchi, D. W. (2015). Recommended pre-test counseling points for noninvasive prenatal testing using cell-free DNA: a 2015 perspective. Prenatal Diagnosis, 35(10), 968–971.CrossRefPubMed

Schoonen, H. M., van Agt, H. M., Essink-Bot, M. L., Wildschut, H. I., Steegers, E. A., & de Koning, H. J. (2011). Informed decision-making in prenatal screening for Down’s syndrome: what knowledge is relevant? Patient Education and Counseling, 84(2), 265–270.CrossRefPubMed

Stacey, D., Légaré, F., Col, N.F., Bennett, C.L., Barry, M.J., Eden, K.B., et al. (2014). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD001431. https://doi.org/10.1002/14651858.CD001431.pub4.

Sung, V. W., Raker, C. A., Myers, D. L., & Clark, M. A. (2010). Treatment decision-making and information-seeking preferences in women with pelvic floor disorders. International Urogynecology Journal, 21(9), 1071–1078. https://doi.org/10.1007/s00192-010-1155-8.CrossRefPubMedPubMedCentral

Van Schendel, R. V., Page-Christiaens, G. C. (. L.)., Beulen, L., Bilardo, C. M., de Boer, M. A., Coumans, A. B. C., et al. (2016). Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part II—women’s perspectives. Prenatal Diagnosis, 36(12), 1091–1098. https://doi.org/10.1002/pd.4941.CrossRefPubMedPubMedCentral

Van Schendel, R. V., van El, C. G., Pajkrt, E., Henneman, L., & Cornel, M. C. (2017). Implementing non-invasive prenatal testing for aneuploidy in a national healthcare system: global challenges and national solutions. BMC Health Services Research, 17, 670. https://doi.org/10.1186/s12913-017-2618-0.CrossRefPubMedPubMedCentral

Vanstone, M., Yacoub, K., Giacomini, M., Hulan, D., & McDonald, S. (2015). Women’s experiences of publicly funded non-invasive prenatal testing in Ontario, Canada: considerations for health technology policy-making. Qualitative Health Research, 25(8), 1069–1084. https://doi.org/10.1177/1049732315589745.CrossRefPubMed

Wilson, K. L., Czerwinski, J. L., Hoskovec, J. M., Noblin, S. J., Sullivan, C. M., Harbison, A., Campion, M. W., Devary, K., Devers, P., & Singletary, C. N. (2013). NSGC practice guideline: prenatal screening and diagnostic testing options for chromosome aneuploidy. Journal of Genetic Counseling, 22(1), 4–15.CrossRefPubMed

Title: 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
Publication date: 01-10-2018
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2018
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-018-0250-8

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 5/2018

Mindfulness Among Genetic Counselors Is Associated with Increased Empathy and Work Engagement and Decreased Burnout and Compassion Fatigue

Managing Couple Conflict During Prenatal Counseling Sessions: An Investigation of Genetic Counselor Experiences and Perceptions

Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

Response to “A Psychological Perspective on Factors Predicting Prophylactic Salpingo-Oophorectomy in a Sample of Italian Women from the General Population. Results from a Hypothetical Study in the Context of BRCA Mutations”

The Process of Disclosure: Mothers’ Experiences of Communicating X-Linked Carrier Risk Information to At-Risk Daughters

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers