Development and evaluation of training resources to prepare health professionals for counselling pregnant women about non-invasive prenatal testing for Down syndrome: A mixed methods study

BMC Pregnancy and Childbirth

Volumn 17, Issue 1, 2017, Pages

  Oxenford, Kerry ^a   Daley, Rebecca ^a   Lewis, Celine ^b,c   Hill, Melissa ^b,c   Chitty, Lyn S ^a,b,c  

^a UNIVERSITY COLLEGE LONDON HOSPITALS   (United Kingdom)

^b GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^c UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

Down syndrome; Education; Health professionals; Midwives; Non invasive prenatal testing; Training

Indexed keywords

ADULT; ARTICLE; ASSESSMENT OF HUMANS; COUNSELING; DOWN SYNDROME; EDUCATION; FEMALE; HEALTH PRACTITIONER; HUMAN; INTERVIEW; KNOWLEDGE; MALE; MIDDLE AGED; MIDWIFE; POST HOC ANALYSIS; PREGNANT WOMAN; PRENATAL SCREENING; QUESTIONNAIRE; SELF PERCEIVED KNOWLEDGE SCORE; TRAINING; ANEUPLOIDY; EVALUATION STUDY; HEALTH CARE PERSONNEL; PREGNANCY; PRENATAL DIAGNOSIS; PROCEDURES; PSYCHOLOGY; QUALITATIVE RESEARCH; TEACHING;

ADULT; ANEUPLOIDY; COUNSELING; DOWN SYNDROME; FEMALE; HEALTH PERSONNEL; HUMANS; MALE; MIDDLE AGED; PREGNANCY; PRENATAL DIAGNOSIS; QUALITATIVE RESEARCH; SURVEYS AND QUESTIONNAIRES; TEACHING;

EID: 85018277862     PISSN: None     EISSN: 14712393     Source Type: Journal    
DOI: 10.1186/s12884-017-1315-7     Document Type: Article

References (45)

1. Tabor A, Alfirevic Z. Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagn Ther. 2010;27:1-7.
2. Akolekar R, Beta J, Picciarelli G, Ogilvie C, D'Antonio F. Procedure-related risk of miscarriage following amniocentesis and chorionic villus sampling: A systematic review and meta-analysis. Ultrasound Obstet Gynecol. 2015;45:16-26.
3. PEGASUS Study. http://pegasus-pegase.ca/pegasus/. Accessed Jan 2016.
4. Oepkes D, Page-Christiaens GC, Bax CJ, Bekker MN, Bilardo CM, Boon EM, Schuring-Blom GH, Coumans AB, Faas BH, Galjaard RH, Go AT, Henneman L, Macville MV, Pajkrt E, Suijkerbuijk RF, Huijsdens-van Amsterdam K, Van Opstal D, Verweij EJ, Weiss MM, Sistermans EA, and for the Dutch NIPT Consortium. Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part I-clinical impact. Prenat Diagn. 2016;36:1083-290.
5. 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.
6. Gil MM, 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. 2015;45:67-73.
7. Gil MM, Revello R, Poon LC, Akolekar R, Nicolaides KH. Clinical implementation of routine screening for fetal trisomies in the UK NHS: Cell-free DNA test contingent on results from first-trimester combined test. Ultrasound Obstet Gynecol. 2016;47:45-52.
8. Chitty LS, Wright D, Hill M, et al. Uptake, outcomes, and costs of implementing non-invasive prenatal testing for Down's syndrome into NHS maternity care:prospective cohort study in eight diverse maternity units. BMJ. 2016;354:i3426.
9. 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;45:249-66.
10. Norton ME, Jacobsson B, Swamy GK, et al. Cell-free DNA analysis for noninvasive examination of trisomy. N Engl J Med. 2015;372:1589-97.
11. American College of Obstetricians and Gynecologists. Committee Opinion No. 640: Cell-free DNA Screening for Fetal Aneuploidy. Obstet Gynecol. 2015;126:e31-7.
12. 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. PLoS One. 2014;9:e93559.
13. Warsof SL, Larion S, Abuhamad AZ. Overview of the impact of noninvasive prenatal testing on diagnostic procedures. Prenat Diagn. 2015;35:972-9.
14. Allyse M, Minear MA, Berson E, et al. Non-invasive prenatal testing:a review of international implementation and challenges. Int J Womens Health. 2015;7:113-26.
15. Newson AJ. Ethical aspects arising from non-invasive fetal diagnosis. Semin Fetal Neonatal Med. 2008;13:103-8.
16. Benn PA, Chapman AR. Practical and ethical considerations of noninvasive prenatal diagnosis. JAMA. 2009;301:2154-6.
17. de Jong A, Dondorp WJ, de Die-Smulders CE, Frints SG, de Wert GM. Non-invasive prenatal testing:ethical issues explored. Eur J Hum Gen. 2010;18:272-7.
18. Seror V, Ville Y. Prenatal screening for Down syndrome:women's involvement in decision-making and their attitudes to screening. Prenat Diagn. 2009;29:120-8.
19. Skirton H, Barr O. Antenatal screening and informed choice:a cross-sectional survey of parents and professionals. Midwifery. 2010;26:596-602.
20. Skirton H, Barr O. Antenatal screening:informed choice and parental consent briefing paper. Foundation for people with learning disabilities. 2011 [Online] Available at: http://www.fpld.org.uk/publications/antenatal-screening-paper/. Accessed 15 May 2015.
21. Tsouroufli M. Routinisation and constraints on informed choice in a one-stop clinic offering first trimester chromosomal antenatal screening for Down's syndrome. Midwifery. 2011;27:431-6.
22. Barr O, Skirton H. Informed decision making regarding antenatal screening for fetal abnormality in the United Kingdom:a qualitative study of parents and professionals. Nurs Health Sci. 2013;15:318-25.
23. Sayres LC, Allyse M, Norton ME, Cho MK. Cell-free fetal DNA testing: a pilot study of obstetric healthcare provider attitudes toward clinical implementation. Prenat Diagn. 2011;31:1070-6.
24. 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.
25. Musci TJ, Fairbrother G, Batey A, Bruursema J, Struble C, Song K. Non-invasive prenatal testing with cell-free DNA:US physician attitudes toward implementation in clinical practice. Prenat Diagn. 2013;33:424-8.
26. Haymon L, Simi E, Moyer K, Aufox S, Ouyang DW. Clinical implementation of noninvasive prenatal testing among maternal fetal medicine specialists. Prenat Diagn. 2014;34:416-23.
27. Horsting JM, Dlouhy SR, Hanson K, Quaid K, Bai S, Hines KA. Genetic counselors' experience with cell-free fetal DNA testing as a prenatal screening option for aneuploidy. J Genet Couns. 2014;23:377-400.
28. Hill M, Johnson JA, Langlois S, et al. Preferences for prenatal tests for Down syndrome:an international comparison of the views of pregnant women and health professionals. Eur J Hum Genet. 2016;24:968-75.
29. Brewer J, Demers L, Musci T. Survey of US obstetrician opinions regarding NIPT use in general practice:implementation and barriers. J Matern Fetal Neonatal Med. 2016:1-4.
30. Farrell RM, Agatisa PK, Mercer MB, Mitchum AG, Coleridge MB. The use of noninvasive prenatal testing in obstetric care:educational resources, practice patterns, and barriers reported by a national sample of clinicians. Prenat Diagn. 2016;36:499-506.
31. Lewis C, Hill M, Chitty LS. 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. 2016;11:e0153147.
32. 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. 2016;24:809-16.
33. Haydon J, Farndon P. Development of competencies for NIPD fetal sex determination, diagnosis of single gene disorders and Down syndrome. 2010; Available from: www.rapid.nhs.uk. Accessed 15 May 2015.
34. UK National Screening Committee. The UK NSC Fetal Anomaly Screening Programme. https://www.govuk/guidance/fetal-anomaly-screening-programme-overview. Accessed 21 Jan 2016.
35. American College of Obstetricians and Gynecologists. Noninvasive prenatal testing for fetal aneuploidy. Committee Opinion No. 545. Obstet Gynecol. 2012;120:1532-4.
36. Benn P, Borrell A, Cuckle H, 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. Prenat Diagn. 2012;32:1-2.
37. Devers PL, Cronister A, Ormond KE, Facio F, Brasington CK, Flodman P. Noninvasive prenatal testing/noninvasive prenatal diagnosis:the position of the National Society of Genetic Counselors. J Genet Couns. 2013;22:291-5.
38. 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.
39. Lewis C, Hill M, Silcock C, Daley R, Chitty L. Non-invasive prenatal testing for trisomy 21:a cross-sectional survey of service users' views and likely uptake. BJOG. 2014;121:582-94.
40. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3:77-101.
41. Carroll JC, Rideout AL, Wilson BJ, et al. Genetic education for primary care providers:improving attitudes, knowledge, and confidence. Can Fam Physician. 2009;55:e92-99.
42. Piechan JL, Hines KA, Koller DL, et al. NIPT and Informed Consent:an Assessment of Patient Understanding of a Negative NIPT Result. J Genet Couns. 2016;25:1127-37.
43. Chumley-Jones HS, Dobbie A, Alford CL. Web-based learning:sound educational method or hype? A review of the evaluation literature. Acad Med. 2002;77:S86-93.
44. Agius RM, Bagnall G. Development and evaluation of the use of the Internet as an educational tool in occupational and environmental health and medicine. Occup Med. 1998;48:337-43.
45. Ruiz JG, Mintzer MJ, Leipzig RM. The impact of E-learning in medical education. Acad Med. 2006;81:207-12.