Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals

Melissa Hill; Jo Ann Johnson; Sylvie Langlois; Hyun Lee; Stephanie Winsor; Brigid Dineley; Marisa Horniachek; Faustina Lalatta; Luisa Ronzoni; Angela N. Barrett; Henna V. Advani; Mahesh Choolani; Ron Rabinowitz; Eva Pajkrt; Rachèl V. Van Schendel; Lidewij Henneman; Wieke Rommers; Caterina M. Bilardo; Paula Rendeiro; Maria João Ribeiro; José Rocha; Ida Charlotte Bay Lund; Olav B. Petersen; Naja Becher; Ida Vogel; Vigdis Stefánsdottir; Sigrun Ingvarsdottir; Helga Gottfredsdottir; Stephen Morris; Lyn S. Chitty

doi:10.1038/ejhg.2015.249

Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals

Melissa Hill^*, Jo Ann Johnson, Sylvie Langlois, Hyun Lee, Stephanie Winsor, Brigid Dineley, Marisa Horniachek, Faustina Lalatta, Luisa Ronzoni, Angela N. Barrett, Henna V. Advani, Mahesh Choolani, Ron Rabinowitz, Eva Pajkrt, Rachèl V. Van Schendel, Lidewij Henneman, Wieke Rommers, Caterina M. Bilardo, Paula Rendeiro, Maria João RibeiroJosé Rocha, Ida Charlotte Bay Lund, Olav B. Petersen, Naja Becher, Ida Vogel, Vigdis Stefánsdottir, Sigrun Ingvarsdottir, Helga Gottfredsdottir, Stephen Morris, Lyn S. Chitty

^*Corresponding author for this work

38 Citations (Scopus)

Abstract

Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.

Original language	English
Journal	European Journal of Human Genetics
Volume	24
Pages (from-to)	968-975
ISSN	1018-4813
DOIs	https://doi.org/10.1038/ejhg.2015.249
Publication status	Published - 2016
Externally published	Yes

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Hill, M., Johnson, J. A., Langlois, S., Lee, H., Winsor, S., Dineley, B., Horniachek, M., Lalatta, F., Ronzoni, L., Barrett, A. N., Advani, H. V., Choolani, M., Rabinowitz, R., Pajkrt, E., Van Schendel, R. V., Henneman, L., Rommers, W., Bilardo, C. M., Rendeiro, P., ... Chitty, L. S. (2016). Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals. European Journal of Human Genetics, 24, 968-975. https://doi.org/10.1038/ejhg.2015.249

Hill, M, Johnson, JA, Langlois, S, Lee, H, Winsor, S, Dineley, B, Horniachek, M, Lalatta, F, Ronzoni, L, Barrett, AN, Advani, HV, Choolani, M, Rabinowitz, R, Pajkrt, E, Van Schendel, RV, Henneman, L, Rommers, W, Bilardo, CM, Rendeiro, P, Ribeiro, MJ, Rocha, J, Bay Lund, IC, Petersen, OB, Becher, N, Vogel, I, Stefánsdottir, V, Ingvarsdottir, S, Gottfredsdottir, H, Morris, S & Chitty, LS 2016, 'Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals', European Journal of Human Genetics, vol. 24, pp. 968-975. https://doi.org/10.1038/ejhg.2015.249

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title = "Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals",

abstract = "Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.",

author = "Melissa Hill and Johnson, {Jo Ann} and Sylvie Langlois and Hyun Lee and Stephanie Winsor and Brigid Dineley and Marisa Horniachek and Faustina Lalatta and Luisa Ronzoni and Barrett, {Angela N.} and Advani, {Henna V.} and Mahesh Choolani and Ron Rabinowitz and Eva Pajkrt and {Van Schendel}, {Rach{\`e}l V.} and Lidewij Henneman and Wieke Rommers and Bilardo, {Caterina M.} and Paula Rendeiro and Ribeiro, {Maria Jo{\~a}o} and Jos{\'e} Rocha and {Bay Lund}, {Ida Charlotte} and Petersen, {Olav B.} and Naja Becher and Ida Vogel and Vigdis Stef{\'a}nsdottir and Sigrun Ingvarsdottir and Helga Gottfredsdottir and Stephen Morris and Chitty, {Lyn S.}",

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AU - Hill, Melissa

AU - Johnson, Jo Ann

AU - Langlois, Sylvie

AU - Lee, Hyun

AU - Winsor, Stephanie

AU - Dineley, Brigid

AU - Horniachek, Marisa

AU - Lalatta, Faustina

AU - Ronzoni, Luisa

AU - Barrett, Angela N.

AU - Advani, Henna V.

AU - Choolani, Mahesh

AU - Rabinowitz, Ron

AU - Pajkrt, Eva

AU - Van Schendel, Rachèl V.

AU - Henneman, Lidewij

AU - Rommers, Wieke

AU - Bilardo, Caterina M.

AU - Rendeiro, Paula

AU - Ribeiro, Maria João

AU - Rocha, José

AU - Bay Lund, Ida Charlotte

AU - Petersen, Olav B.

AU - Becher, Naja

AU - Vogel, Ida

AU - Stefánsdottir, Vigdis

AU - Ingvarsdottir, Sigrun

AU - Gottfredsdottir, Helga

AU - Morris, Stephen

AU - Chitty, Lyn S.

PY - 2016

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N2 - Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.

AB - Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.

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SP - 968

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JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

ER -

Preferences for prenatal tests for Down syndrome: An international comparison of the views of pregnant women and health professionals

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