TY - JOUR
T1 - Factor's that impact on women's decision-making around prenatal genomic tests
T2 - An international discrete choice survey
AU - Buchanan, James
AU - Hill, Melissa
AU - Vass, Caroline M.
AU - Hammond, Jennifer
AU - Riedijk, Sam
AU - Klapwijk, Jasmijn E.
AU - Harding, Eleanor
AU - Lou, Stina
AU - Vogel, Ida
AU - Hui, Lisa
AU - Ingvoldstad-Malmgren, Charlotta
AU - Soller, Maria Johansson
AU - Ormond, Kelly E.
AU - Choolani, Mahesh
AU - Zheng, Qian
AU - Chitty, Lyn S.
AU - Lewis, Celine
N1 - Funding Information: We would like to thank Dynata for facilitating the survey and the parents around the globe who participated in the DCE. We would also like to thank the HPs who helped in the development of the attributes and levels. This work was supported by a Wellcome Trust Small Grant in Humanities and Social Science [211288/Z/18/Z]. Celine Lewis is funded by an NIHR Advanced Fellowship (NIHR300099). Lisa Hui was funded by an Australian National Health and Medical Research Early Career Fellowship. Lyn S. Chitty and MH are partially funded by the NIHR Biomedical Research Centre at Great Ormond Street Hospital. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the Wellcome Trust, the NHS, the NIHR, or the UK Department of Health. Ida Vogel and Stina Lou are funded by a grant from the Novo Nordisk Foundation no: NNF16OC0018772. Funding Information: We would like to thank Dynata for facilitating the survey and the parents around the globe who participated in the DCE. We would also like to thank the HPs who helped in the development of the attributes and levels. This work was supported by a Wellcome Trust Small Grant in Humanities and Social Science [211288/Z/18/Z]. Celine Lewis is funded by an NIHR Advanced Fellowship (NIHR300099). Lisa Hui was funded by an Australian National Health and Medical Research Early Career Fellowship. Lyn S. Chitty and MH are partially funded by the NIHR Biomedical Research Centre at Great Ormond Street Hospital. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the Wellcome Trust, the NHS, the NIHR, or the UK Department of Health. Ida Vogel and Stina Lou are funded by a grant from the Novo Nordisk Foundation no: NNF16OC0018772. Publisher Copyright: © 2022 The Authors. Prenatal Diagnosis published by John Wiley & Sons Ltd.
PY - 2022/6
Y1 - 2022/6
N2 - Objective: We conducted a survey-based discrete-choice experiment (DCE) to understand the test features that drive women's preferences for prenatal genomic testing, and explore variation across countries. Methods: Five test attributes were identified as being important for decision-making through a literature review, qualitative interviews and quantitative scoring exercise. Twelve scenarios were constructed in which respondents choose between two invasive tests or no test. Women from eight countries who delivered a baby in the previous 24 months completed a DCE presenting these scenarios. Choices were modeled using conditional logit regression analysis. Results: Surveys from 1239 women (Australia: n = 178; China: n = 179; Denmark: n = 88; Netherlands: n = 177; Singapore: n = 90; Sweden: n = 178; UK: n = 174; USA: n = 175) were analyzed. The key attribute affecting preferences was a test with the highest diagnostic yield (p < 0.01). Women preferred tests with short turnaround times (p < 0.01), and tests reporting variants of uncertain significance (VUS; p < 0.01) and secondary findings (SFs; p < 0.01). Several country-specific differences were identified, including time to get a result, who explains the result, and the return of VUS and SFs. Conclusion: Most women want maximum information from prenatal genomic tests, but our findings highlight country-based differences. Global consensus on how to return uncertain results is not necessarily realistic or desirable.
AB - Objective: We conducted a survey-based discrete-choice experiment (DCE) to understand the test features that drive women's preferences for prenatal genomic testing, and explore variation across countries. Methods: Five test attributes were identified as being important for decision-making through a literature review, qualitative interviews and quantitative scoring exercise. Twelve scenarios were constructed in which respondents choose between two invasive tests or no test. Women from eight countries who delivered a baby in the previous 24 months completed a DCE presenting these scenarios. Choices were modeled using conditional logit regression analysis. Results: Surveys from 1239 women (Australia: n = 178; China: n = 179; Denmark: n = 88; Netherlands: n = 177; Singapore: n = 90; Sweden: n = 178; UK: n = 174; USA: n = 175) were analyzed. The key attribute affecting preferences was a test with the highest diagnostic yield (p < 0.01). Women preferred tests with short turnaround times (p < 0.01), and tests reporting variants of uncertain significance (VUS; p < 0.01) and secondary findings (SFs; p < 0.01). Several country-specific differences were identified, including time to get a result, who explains the result, and the return of VUS and SFs. Conclusion: Most women want maximum information from prenatal genomic tests, but our findings highlight country-based differences. Global consensus on how to return uncertain results is not necessarily realistic or desirable.
UR - http://www.scopus.com/inward/record.url?scp=85129135960&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/pd.6159
DO - https://doi.org/10.1002/pd.6159
M3 - Article
C2 - 35476801
SN - 0197-3851
VL - 42
SP - 934
EP - 946
JO - Prenatal diagnosis
JF - Prenatal diagnosis
IS - 7
ER -