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

Volumn 11, Issue 4, 2016, Pages

  Lewis, Celine ^a   Hill, Melissa ^a,b   Chitty, Lyn S ^a,b  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b GREAT ORMOND STREET HOSPITAL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ANEUPLOIDY; ANXIETY; ARTICLE; CLINICAL ARTICLE; CONFUSION (UNCERTAINTY); DOWN SYNDROME; FEMALE; HEALTH CARE DELIVERY; HIGH RISK POPULATION; HUMAN; MOTIVATION; NON INVASIVE PRENATAL TESTING; PERSONAL EXPERIENCE; PRENATAL SCREENING; PUBLIC HEALTH; RISK ASSESSMENT; WOMEN'S HEALTH; CLINICAL TRIAL; CROSS-SECTIONAL STUDY; DECISION MAKING; GENETIC SCREENING; GENETICS; MIDDLE AGED; MULTICENTER STUDY; PREGNANCY; PRENATAL DIAGNOSIS; PROCEDURES; PSYCHOLOGY; YOUNG ADULT;

ADULT; ANEUPLOIDY; CROSS-SECTIONAL STUDIES; DECISION MAKING; DOWN SYNDROME; FEMALE; GENETIC TESTING; HUMANS; MIDDLE AGED; PREGNANCY; PRENATAL DIAGNOSIS; PUBLIC HEALTH; YOUNG ADULT;

EID: 84962853169     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0153147     Document Type: Article

References (37)

1. Screening tests for you and your baby: Important information about the screening choices you will have during and after your pregnancy.. 2015. Available: https://www.gov. uk/government/uploads/system/uploads/attachment data/file/440859/STFYAYB 010715 web ready.pdf
2. Tabor A, Alfirevic Z. Update on procedure-related risks for prenatal diagnosis techniques. Fetal diagnosis and therapy. 2010;27(1):1-7. Epub 2010/01/07. doi: 10.1159/000271995 PMID: 20051662.
3. Malone FD, Canick JA, Ball RH, Nyberg DA, Comstock CH, Bukowski R, et al. First-trimester or second-trimester screening, or both, for Down's syndrome. The New England journal of medicine. 2005;353(19):2001-11. Epub 2005/11/12. doi: 10.1056/NEJMoa043693 PMID: 16282175.
4. Norton ME, Brar H, Weiss J, Karimi A, Laurent LC, Caughey AB, et al. Non-Invasive Chromosomal Evaluation (NICE) Study: results of a multicenter prospective cohort study for detection of fetal trisomy 21 and trisomy 18. American journal of obstetrics and gynecology. 2012;207(2):137e1-8. Epub 2012/06/30. doi: 10.1016/j.ajog.2012.05.021 PMID: 22742782.
5. Bianchi DW, Parker RL, Wentworth J, Madankumar R, Saffer C, Das AF, et al. DNA sequencing versus standard prenatal aneuploidy screening. The New England journal of medicine. 2014;370(9):799-808. Epub 2014/02/28. doi: 10.1056/NEJMoa1311037 PMID: 24571752.
6. Palomaki GE, Deciu C, Kloza EM, Lambert-Messerlian GM, Haddow JE, Neveux LM, et al. DNA sequencing of maternal plasma reliably identifies trisomy 18 and trisomy 13 as well as Down syndrome: an international collaborative study. Genet Med. 2012;14(3):296-305. Epub 2012/01/28. doi: 10.1038/gim.2011.73 PMID: 22281937.
7. Norton ME, Jacobsson B, Swamy GK, Laurent LC, Ranzini AC, Brar H, et al. Cell-free DNA Analysis for Noninvasive Examination of Trisomy. The New England journal of medicine. 2015. Epub 2015/04/02. doi: 10.1056/NEJMoa1407349 PMID: 25830321.
8. 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(3):249-66. Epub 2015/02/03. doi: 10.1002/uog.14791 PMID: 25639627.
9. Benn P, Borrell A, Cuckle H, Dugoff L, Gross S, Johnson JA, et al. Prenatal Detection of Down Syndrome using Massively Parallel Sequencing (MPS): a rapid response statement from a committee on behalf of the Board of the International Society for Prenatal Diagnosis, 24 October 2011. Prenatal diagnosis. 2012;32(1):1-2. Epub 2012/01/26. doi: 10.1002/pd.2919 PMID: 22275335.
10. Gregg AR, Gross SJ, Best RG, Monaghan KG, Bajaj K, Skotko BG, et al. ACMG statement on noninvasive prenatal screening for fetal aneuploidy. Genet Med. 2013;15(5):395-8. doi: 10.1038/gim.2013.29 PMID: 23558255.
11. Hill M, Wright D, Daley R, Lewis C, McKay F, Mason S, 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 and childbirth. 2014;14(1):229-39. doi: 10.1186/1471-2393-14-229 PMID: 25027965.
12. Gil MD, Giunta G, Macalli EA, Poon LC, Nicolaides KH. UK NHS pilot study on cell-free DNA testing in screening for fetal trisomies: Factors affecting uptake. Ultrasound Obstet Gynecol. 2014. doi: 10.1002/uog.14683 PMID: 25302655.
13. Lewis C, Hill M, Silcock C, Daley R, Chitty LS. Non-invasive prenatal testing for trisomy 21: a cross sectional survey of service users'views and likely uptake. BJOG. 2014;121(5):582-94. doi: 10.1111/1471-0528.12579 PMID: 24433394
14. 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;16:223-32. Epub Jul. 25. doi: 10.1159/000353523 PMID: 23886854
15. 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;14:905-13. Epub 2012/09/01. doi: 10.1038/gim.2012.68 PMID: 22935718.
16. 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. 2015. Epub 2015/10/29. doi: 10.1038/ejhg.2015.207 PMID: 26508572.
17. Dormandy E, Michie S, Hooper R, Marteau TM. Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices? International journal of epidemiology. 2005;34(2):346-52. Epub 2005/03/02. doi: 10.1093/ije/dyi021 PMID: 15737971.
18. Lewis C, Hill M, Skirton H, Chitty L. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. Eur J Hum Genet. 2015; In press.
19. O'Connor A. User Manual-Decisional Conflict Scale (16 item statement format) Ottawa: Ottawa Hospital Research Institute 1993 (updated 2010) [Accessed 16 July 2013]. Available: http://decisionaid. ohri.ca/docs/develop/User Manuals/UM Decisional Conflict.pdf.
20. Marteau TM, Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). The British journal of clinical psychology/the British Psychological Society. 1992;31(Pt3):301-6. Epub 1992/09/01. PMID: 1393159.
21. O'Connor A. User Manual-Decision Regret Scale Ottawa: Ottawa Hospital Research Institute 1996 (modified 2003) [Accessed 16 July 2013]. Available: http://decisionaid.ohri.ca/docs/develop/User Manuals/UM Regret Scale.pdf.
22. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77-101.
23. Bland JM, Altman DG. Cronbach's alpha. BMJ (Clinical research ed. 1997;314(7080):572. Epub 1997/02/22. PMID: 9055718; PubMed Central PMCID: PMCPmc2126061.
24. Susanne GO, Sissel S, Ulla W, Charlotta G, Sonja OL. Pregnant women's responses to information about an increased risk of carrying a baby with Down syndrome. Birth (Berkeley, Calif. 2006;33(1):64-73. doi: 10.1111/j.0730-7659.2006.00075.x PMID: 16499533.
25. Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess. 2004;8(33):iii, ix-x, 1-109. Epub 2004/08/10. PMID: 15298822.
26. Hurford E, Hawkins A, Hudgins L, Taylor J. The decision to continue a pregnancy affected by Down syndrome: timing of decision and satisfaction with receiving a prenatal diagnosis. J Genet Couns. 2013;22(5):587-93. doi: 10.1007/s10897-013-9590-6 PMID: 23604903.
27. Dunkel Schetter C, Tanner L. Anxiety, depression and stress in pregnancy: implications for mothers, children, research, and practice. Current opinion in psychiatry. 2012;25(2):141-8. Epub 2012/01/21. doi: 10.1097/YCO.0b013e3283503680 PMID: 22262028; PubMed Central PMCID: PMCPmc4447112.
28. Silcock C, Liao L-M, Hill M, Chitty LS. Will the introduction of non-invasive prenatal testing for Down's syndrome undermine informed choice? Health Expectations. 2014. Epub Feb. 20. doi: 10.1111/hex. 12159
29. Yi H, Hallowell N, Griffiths S, Yeung Leung T. Motivations for undertaking DNA sequencing-based noninvasive prenatal testing for fetal aneuploidy: a qualitative study with early adopter patients in Hong Kong. PloSone. 2013;8(11):e81794. doi: 10.1371/journal.pone.0081794 PMID: 24312358; PubMed Central PMCID: PMC3842294.
30. Royal College Obstetricians and Gynaecologists. Non-invasive prenatal testing for chromosomal abnormality using maternal plasma DNA. RCOG Scientific Impact Paper No 15. 2014.
31. Morris S, Karlsen S, Chung N, Hill M, Chitty LS. Model-Based Analysis of Costs and Outcomes of Non-Invasive Prenatal Testing for Down's Syndrome Using Cell Free Fetal DNA in the UK National Health Service. PloSone. 2014;9(4):e93559. Epub 2014/04/10. doi: 10.1371/journal.pone.0093559 PMID: 24714162.
32. Sachs A, Blanchard L, Buchanan A, Norwitz E, Bianchi DW. Recommended pre-test counseling points for noninvasive prenatal testing using cell-free DNA: a 2015 perspective. Prenatal diagnosis. 2015;35(10):968-71. Epub 2015/08/08. doi: 10.1002/pd.4666 PMID: 26245889.
33. Taylor JB, Chock VY, Hudgins L. NIPT in a Clinical Setting: An analysis of Uptake in the First Months of Clinical Availability. J Genet Couns. 2014;23(1):72-8. doi: 10.1007/s10897-013-9609-z PMID: 23723049.
34. Fisher J, Lafarge C. Women's experience of care when undergoing termination of pregnancy for fetal anomaly in England. Journal of Reproductive and Infant Psychology. 2015;33(1).
35. Fisher J, Lohr PA, Lafarge C, Robson SC. Termination for fetal anomaly: are women in England given a choice of method? Journal of obstetrics and gynaecology: the journal of the Institute of Obstetrics and Gynaecology. 2015;35(2):168-72. Epub 2014/07/25. doi: 10.3109/01443615.2014.940291 PMID: 25058716.
36. Royal College Obstetricians and Gynaecologists. Termination of pregnancy for fetal abnormality in England, Scotland and Wales: Report of a working party.. London: RCOG, 2010.
37. Seror V, Ville Y. Prenatal screening for Down syndrome: women's involvement in decision-making and their attitudes to screening. Prenatal diagnosis. 2009;29(2):120-8. PMID: 19123253. doi: 10.1002/pd. 2183