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

European Journal of Human Genetics

Volumn 24, Issue 7, 2016, Pages 968-975

  Hill, Melissa ^a   Johnson, Jo Ann ^b   Langlois, Sylvie ^c   Lee, Hyun ^c   Winsor, Stephanie ^d   Dineley, Brigid ^d   Horniachek, Marisa ^d   Lalatta, Faustina ^e   Ronzoni, Luisa ^e   Barrett, Angela N ^f   Advani, Henna V ^f   Choolani, Mahesh ^f   Rabinowitz, Ron ^g   Pajkrt, Eva ^h   Van Schendel, Rachèl V ⁱ   Henneman, Lidewij ⁱ   Rommers, Wieke ^j   Bilardo, Caterina M ^j   Rendeiro, Paula ^k   Ribeiro, Maria João ^l   Rocha, José ^k,l   Bay Lund, Ida Charlotte ^m   Petersen, Olav B ^m   Becher, Naja ^m   Vogel, Ida ^m   Stefánsdottir, Vigdis ⁿ   Ingvarsdottir, Sigrun ^n,o   Gottfredsdottir, Helga ^n,o   Morris, Stephen ^p   Chitty, Lyn S ^a   more..

^a GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^b UNIVERSITY OF CALGARY   (Canada)

^c UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^d MCMASTER UNIVERSITY   (Canada)

^e FONDAZIONE IRCCS CA GRANDA OSPEDALE MAGGIORE POLICLINICO   (Italy)

^f NATIONAL UNIVERSITY OF SINGAPORE   (Singapore)

^g SHAARE ZEDEK MEDICAL CENTER   (Israel)

^h ACADEMIC MEDICAL CENTER   (Netherlands)

ⁱ VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^j UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^k CGC GENETICS   (Portugal)

^l INSTITUTO DE INVESTIGAÇÃO E FORMAÇÃO AVANÇADA EM CIÊNCIAS E TECNOLOGIAS DA SAÚDE   (Portugal)

^m AARHUS UNIVERSITY HOSPITAL   (Denmark)

ⁿ LANDSPITALI UNIVERSITY HOSPITAL   (Iceland)

^o UNIVERSITY OF ICELAND   (Iceland)

^p UNIVERSITY COLLEGE LONDON   (United Kingdom)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGE; ARTICLE; CANADA; COMPARATIVE STUDY; DENMARK; DIAGNOSTIC ACCURACY; DOWN SYNDROME; FEMALE; GEOGRAPHIC DISTRIBUTION; HEALTH CARE DELIVERY; HEALTH CARE PLANNING; HEALTH PRACTITIONER; HUMAN; ICELAND; ISRAEL; ITALY; MAJOR CLINICAL STUDY; MEDICAL INFORMATION; NETHERLANDS; PATIENT SAFETY; PORTUGAL; PREGNANT WOMAN; PRENATAL SCREENING; PRIORITY JOURNAL; QUESTIONNAIRE; SINGAPORE; SPONTANEOUS ABORTION; UNITED KINGDOM; ATTITUDE TO HEALTH; ETHICS; EUROPEAN UNION; GENETIC SCREENING; GENETICS; HEALTH CARE PERSONNEL; MALE; PREGNANCY; PRENATAL DIAGNOSIS; PSYCHOLOGY;

CANADA; DOWN SYNDROME; EUROPEAN UNION; FEMALE; GENETIC TESTING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH PERSONNEL; HUMANS; ISRAEL; MALE; PREGNANCY; PREGNANT WOMEN; PRENATAL DIAGNOSIS; SINGAPORE;

EID: 84947551762     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2015.249     Document Type: Article

References (37)

1. Minear MA, Lewis C, Pradhan S, Chandrasekharan S: Global perspectives on clinical adoption of NIPT. Prenat Diagn 2015; 35: 959-967.
2. Gil MM, Quezada MS, Revello R, Akolekar R, Nicolaides KH: Analysis of cell-free DNA in maternal blood in screening for fetal aneuploidies: updated meta-analysis. Ultrasound Obstet Gynecol 2015; 45: 249-266.
3. American College of Obstetricians and Gynecologists: Committee opinion no. 640: cellfree dna screening for fetal aneuploidy. Obstet Gynecol 2015; 126: e31-e37.
4. Norton ME, Jacobsson B, Swamy GK et al: Cell-free DNA analysis for noninvasive examination of trisomy. N Engl J Med 2015; 372: 1589-1597.
5. Warsof SL, Larion S, Abuhamad AZ: Overview of the impact of noninvasive prenatal testing on diagnostic procedures. Prenat Diagn 2015; 35: 972-979.
6. Chiu RW, Chan KC, Gao Y et al: Noninvasive prenatal diagnosis of fetal chromosomal aneuploidy by massively parallel genomic sequencing of DNA in maternal plasma. Proc Natl Acad Sci USA 2008; 105: 20458-20463.
7. Fan HC, Blumenfeld YJ, Chitkara U, Hudgins L, Quake SR: Noninvasive diagnosis of fetal aneuploidy by shotgun sequencing DNA from maternal blood. Proc Natl Acad Sci USA 2008; 105: 16266-16271.
8. Allyse M, Minear MA, Berson E et al: Non-invasive prenatal testing: a review of international implementation and challenges. Int J Womens Health 2015; 7: 113-126.
9. Ryan M, Diack J, Watson V, Smith N: Rapid prenatal diagnostic testing for Down syndrome only or longer wait for full karyotype: the views of pregnant women. Prenat Diagn 2005; 25: 1206-1211.
10. Bishop A, Marteau T, Armstrong D et al: Women and health professional's preferences for Down's Syndrome screening tests: a conjoint analysis study. BJOG 2004; 111: 775-779.
11. Lewis SM, Cullinane FM, Carlin JB, Halliday JL: Women's and health professionals' preferences for prenatal testing for Down syndrome in Australia. Aust N Z J Obstet Gynaecol 2006; 46: 205-211.
12. Lewis SM, Cullinane FN, Bishop AJ et al: A comparison of Australian and UK obstetricians' and midwives' preferences for screening tests for Down syndrome. Prenat Diagn 2006; 26: 60-66.
13. Hill M, Fisher J, Chitty LS, Morris S: Women's and health professionals' preferences for prenatal tests for Down syndrome: a discrete choice experiment to contrast noninvasive prenatal diagnosis with current invasive tests. Genet Med 2012; 14: 905-913.
14. Beulen L, Grutters JP, Faas BH et al: Women's and healthcare professionals' preferences for prenatal testing: a discrete choice experiment. Prenat Diagn 2015; 35: 549-557.
15. Carroll FE, Al-Janabi H, Flynn T, Montgomery AA: Women and their partners' preferences for Down's syndrome screening tests: a discrete choice experiment. Prenat Diagn 2013; 33: 449-456.
16. Ryan M, Gerard K, Amaya-Amaya M: Using Discrete Choice Experiments to Value Health and Health Care. Dordrecht, Netherlands: Springer, 2008.
17. Lancsar E, Louviere J: Conducting discrete choice experiments to inform healthcare decision making: a user's guide. Pharmacoeconomics 2008; 26: 661-677.
18. Tabor A, Alfirevic Z: Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagn Ther 2010; 27: 1-7.
19. Hahn G, Shapiro S: A Catalogue and Computer Program for the Design and Analysis of Orthoganol Symmetric and Asymmetric Fractional Factorial Experiments. Schenectady, NY, USA: General Electric Research and Development Centre, 1966.
20. McFadden D, Conditional logit analysis of qualitative choice behavior, in Zarembka P (ed): Frontiers in Econometrics. New York, USA: Academic Press, 1974, pp 105-142.
21. Haaijer R, Kamakura W, Wedel M: The & quot;no-choice" alternative in conjoint choice experiments. Int J Market Res 2001; 43: 93-106.
22. Dondorp W, de Wert G, Bombard Y et al: Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Eur J Hum Genet 2015; 23: 1592.
23. Hill M, Wright D, Daley R et al: Evaluation of non-invasive prenatal testing (NIPT) for aneuploidy in an NHS setting: a reliable accurate prenatal non-invasive diagnosis (RAPID) protocol. BMC Pregnancy Childbirth 2014; 14: 229.
24. TRIDENT Study. Available at:. http://www.emgo.nl/research/quality-of-care/researchprojects/1451/trident-study-trial-by-dutch-laboratories-for-evaluation-of-non-invasiveprenatal- testing-nipt/background/(accessed on April 2015).
25. PEGASUS Study. Available at:. http://pegasus-pegase.ca/pegasus/(accessed on April 2015).
26. Hodgson J, Spriggs M: A practical account of autonomy: why genetic counseling is especially well suited to the facilitation of informed autonomous decision making. J Genet Couns 2005; 14: 89-97.
27. Dormandy E, Marteau TM: Uptake of a prenatal screening test: the role of healthcare professionals' attitudes towards the test. Prenat Diagn 2004; 24: 864-868.
28. Lewis C, Silcock C, Chitty LS: Non-invasive prenatal testing for Down's syndrome: pregnant women's views and likely uptake. Public Health Genomics 2013; 16: 223-232.
29. van Schendel RV, Dondorp WJ, Timmermans DR et al: NIPT-based screening for Down syndrome and beyond: what do pregnant women think? Prenat Diagn 2015; 35: 598-604.
30. 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: 429-434.
31. van den Heuvel A, Chitty L, Dormandy E et al: Is informed choice in prenatal testing universally valued? A population-based survey in Europe and Asia. BJOG 2009; 116: 880-885.
32. Yu J: A systematic review of issues around antenatal screening and prenatal diagnostic testing for genetic disorders: women of Asian origin in western countries. Health Soc Care Community 2012; 20: 329-346.
33. Fransen MP, Essink-Bot ML, Vogel I et al: Ethnic differences in informed decisionmaking about prenatal screening for Down's syndrome. J Epidemiol Community Health 2010; 64: 262-268.
34. Gitsels-van der Wal JT, Verhoeven PS, Mannien J et al: Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy Childbirth 2014; 14: 264.
35. Crombag NM, Vellinga YE, Kluijfhout SA et al: Explaining variation in Down's syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews. BMC. Health Serv Res 2014; 14: 437.
36. Bakker M, Birnie E, Pajkrt E, Bilardo CM, Snijders RJ: Low uptake of the combined test in The Netherlands-which factors contribute? Prenat Diagn 2012; 32: 1305-1312.
37. Flaherty JA, Gaviria FM, Pathak D et al: Developing instruments for cross-cultural psychiatric research. J Nerv Ment Dis 1988; 176: 257-263.