Decisional needs assessment regarding Down syndrome prenatal testing: A systematic review of the perceptions of women, their partners and health professionals

Prenatal Diagnosis

Volumn 28, Issue 13, 2008, Pages 1183-1203

  St Jacques, Sylvie ^a   Grenier, Sonya ^a   Charland, Marc ^a   Forest, Jean Claude ^a,b   Rousseau, Fraņcois ^a,b   Légaré, France ^a,b  

^a LAVAL UNIVERSITY   (Canada)

^b UNIVERSITÉ LAVAL   (Canada)

Author keywords

Decision making; Decisional needs; Diagnostic tests; Down syndrome; Obstetrics; Prenatal testing; Primary care; Screening tests

Indexed keywords

CLINICAL TRIAL; DECISION MAKING; DEMOGRAPHY; DOWN SYNDROME; HEALTH PRACTITIONER; HUMAN; INFORMATION PROCESSING; MATERNAL ATTITUDE; MEDICAL LITERATURE; PATERNAL ATTITUDE; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; REVIEW; SYSTEMATIC REVIEW;

DECISION MAKING; DOWN SYNDROME; FEMALE; HUMANS; MALE; PREGNANCY; PRENATAL DIAGNOSIS;

EID: 58049198502     PISSN: 01973851     EISSN: 10970223     Source Type: Journal    
DOI: 10.1002/pd.2059     Document Type: Review

References (71)

1. Al-Jader L, Parry-Langdon N, Smith R. 2000. Survey of attitudes of pregnant women towards Down syndrome screening. Prenat Diagn 20(1): 23-29.
2. Baillie C, Smith J, Hewison J, Mason G. 2000. Ultrasound screening for chromosomal abnormality: Women's reactions to false positive results. Br J Health Psychol 5(4): 377-394.
3. Bandura A. 1982. The assessment and predictive generality of selfpercepts of efficacy. J Behav Ther Exp Psychiatry 13(3): 195-199.
4. Bechara A. 2004. The role of emotion in decision-making: evidence from neurological patients with orbitofrontal damage. Brain Cogn 55(1): 30-40.
5. Browner C, Preloran H. 2000. Latinas, amniocentesis and the discourse of choice. Cult Med Psychiatry 24(3): 353-375.
6. Browner C, Preloran H. 2004. Expectations, emotions, medical decision making: a case study on the use of amniocentesis. Transcult Psychiatry 41(4): 427-444.
7. Browner C, Preloran H, Cox S. 1999. Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners. Am J Public Health 89(11): 1658-1666.
8. Brunger F, Lippman A. 1995. Resistance and adherence to the norms of genetic counseling. J Genet Couns 4(3): 151-167.
9. Carroll J, Brown J, Reid A, Pugh P. 2000. Women's experience of maternal serum screening. Can Fam Physician 46: 614-620.
10. Cederholm M, Axelsson O, Sjoden PO. 1999. Women's knowledge, concerns and psychological reactions before undergoing an invasive procedure for prenatal karyotyping. Ultrasound in Obstetrics and Gynecology 14(4): 267-272.
11. Charles C, Gafni A, Whelan T. 1997. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 44(5): 681-692.
12. Chitty L. 1998. Prenatal screening for chromosome abnormalities. Br Med Bull 54(4): 839-856.
13. Coricelli G, Dolan R, Sirigu A. 2007. Brain, emotion and decision making: the paradigmatic example of regret. Trends Cogn Sci 11(6): 258-265.
14. Crabtree BF, Miller WL. 1992. A template approach to text analysis : developing and using codebooks. Doing Qualitative Research. Sage Publications: CA, USA, pp 93-109.
15. Dahl K, Kesmodel U, Hvidman L, Olesen F. 2006. Informed consent: providing information about prenatal examinations. Acta Obstet Gynecol 85: 1420-1425.
16. Deber R. 1994. Physicians in health care management: 7. The patient-physician partnership: changing roles and the desire for information. Can Med Assoc J 151(2): 171-176.
17. Department of Health. 2001. The Expert Patient: A new approach to chronic disease management for the 21st century, August. Ekelin M, Crang-Svalenius E. 2004. Midwives' attitudes to and knowledge about a newly introduced foetal screening method. Scand J Caring Sci 18(3): 287-293.
18. Ekwo E, Seals B, Kim J, Williamson R, Hanson J. 1985. Factors influencing maternal estimates of genetic risk. Am J Med Genet 20: 491-504.
19. Garel M, Gosme-Seguret S, Kaminski M, Cuttini M. 2002. Ethical decision-making in prenatal diagnosis and termination of pregnancy: a qualitative survey among physicians and midwives. Prenat Diagn 22(9): 811-817.
20. Grant S. 2005. Options for Down syndrome screening: what will women choose? J Midwifery Womens Health 50(3): 211-218.
21. Greydanus D, Pratt H. 2005. Syndromes and disorders associated with mental retardation. Indian J Pediatr 72(10): 859-864.
22. Gutnik L, Forogh Hakimzada A, Yoskowitz N, Patel V. 2006. The role of emotion in decision-making: a cognitive neuroeconomic approach towards understanding sexual risk behavior. J Biomed Inform 39: 720-736.
23. Hunt L, De Voogd K, Castaneda H. 2005. The routine and the traumatic in prenatal genetic diagnosis: Does clinical information inform patient decision-making? Patient Educ Couns 56(3): 302-312.
24. Hunter A, Cappelli M, Humphreys L, et al. 2005. A randomized trial comparing alternative approaches to prenatal diagnosis counseling in advanced maternal age patients. Clin Genet 67(4): 303-313.
25. Jaques A, Bell R, Watson L, Halliday J. 2004. People who influence women's decisions and preferred sources of information about prenatal testing for birth defects. Aust N Z J Obstet Gynaecol 44: 233-238.
26. Jorgensen FS. 1995. Declining an alpha-fetoprotein test in pregnancy, why and who? Acta Obstetricia et Gynecologica Scandinavica 74(1): 3-11.
27. Kenen R, Smith A, Watkins C, Zuber-Pittore C. 2000a. To use or not to use: Male partners' perspectives on decision making about prenatal diagnosis. J Genet Couns 9(3): 33-45.
28. Kenen R, Smith A, Watkins C, Zuber-Pittore C. 2000b. To use or not to use: the prenatal genetic technology/worry conundrum. J Genet Couns 9(3): 203-217.
29. Kmet L, Lee R, Cook L. 2004. Standard quality assessment for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation Med Res 13: 28 pages.
30. Kuppermann M, Learman L, Gates E, et al. 2006. Beyond race or ethnicity and socioeconomic status: predictors of prenatal testing for Down syndrome. Obstet Gynecol 107(5): 1087-1097.
31. Learman L, Kuppermann M, Gates E, Nease RJ, Gildengorin V, Washington A. 2003. Social and familial context of prenatal genetic testing decisions: are there racial/ethnic differences? Am J Med Genet C Semin Med Genet 119(1): 19-26.
32. Levy V. 1999. Maintaining equilibrium: a grounded theory study of the processes involved when women make informed choices during pregnancy. Midwifery 15(2): 109-119.
33. Liamputtong P, Watson L. 2002. The voices and concerns about prenatal testing of Cambodian, Lao and Vietnamese women in Australia. Midwifery 18(4): 304-313.
34. Lippman A. 1999. Embodied knowledge and making sense of prenatal diagnosis. J Genet Couns 8(5): 255-274.
35. Locock L, Alexande J. 2006. 'Just a bystander'? Men's place in the process of fetal screening and diagnosis. Soc Sci Med 62(6): 1349-1359.
36. Luce M. 2005. Decision making as coping. Health Psychol 24(Suppl. 4): S23-S28.
37. Marteau T, Kidd J, Michie S, Cook R, Johnston M, Shaw RW. 1993a. Anxiety, knowledge and satisfaction in women receiving false positive results on routine prenatal screening: a randomized controlled trial. J Psychosom Obstet Gynaecol 14: 185-196.
38. Marteau TM, Plenicar M, Kidd J. 1993b. Obstetricians presenting amniocentesis to pregnant women: practice observed. J Reprod Infant Psychol 11: 3-10.
39. Michie S, Dormandy E, Marteau TM. 2002. The multi-dimensional measure of informed choice: a validation study. Patient Educ Counsel 48: 87-91.
40. Moyer A, Brown B, Gates E, Daniels M, Brown H, Kuppermann M. 1999. Decisions about prenatal testing for chromosomal disorders: perceptions of a diverse group of pregnant women. J Womens Health Gend Based Med 8(4): 521-531.
41. Muller M, Bleker O, Bonsel G, Bilardo C. 2006. Women's opinions on the offer and use of nuchal translucency screening for Down syndrome. Prenat Diagn 26(2): 105-111.
42. Nicolaides K. 2004. First-trimester screening for Down's syndrome. N Engl J Med 350(6): 619-621.
43. O'Cathain A, Thomas K, Walters S, Nicholl J, Kirkham M. 2002. Women's perceptions of informed choice in maternity care. Midwifery 18(2): 136-144.
44. O'Connor A. 1995. Validation of a decisional conflict scale. Med Decis Making 15(1): 25-30.
45. O'Connor A, Drake E, Wells G, Tugwell P, Laupacis A, Elmslie T. 2003. A survey of the decision-making needs of Canadians faced with complex health decisions. Health Expect 6: 1-13.
46. O'Connor A, Jacobsen M, Stacey D. 2002. An evidence-based approach to managing women's decisional conflict. J Obstet Gynecol Neonatal Nurs 31: 550-581.
47. O'Connor A, Rostom A, Fiset V, et al. 1999. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 319(7212): 731-734.
48. O'Connor A, Stacey A, Entwistle V, et al. 2006. Decision aids for people facing health treatment or screening decisions (Cochrane Review), The Cochrane Library 3) http://www.mrw.interscience. wiley.com/cochrane/ clsysrev/articles/CD001431/pdf_fs.html.
49. O'Connor A, Tugwell P, Wells G, et al. 1998. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns 33(3): 267-279.
50. Öhman S, Saltvedt S, Waldenström U, Grunewald C, Olin-Lauritzen S. 2006. Pregnant women's responses to information about an increased risk of carrying a baby with Down syndrome. Birth 33(1): 64-73.
51. Pilnick A, Fraser D, James D. 2004. Presenting and discussing nuchal translucency screening for fetal abnormality in the UK. Midwifery 20(1): 82-93.
52. Preloran H, Browner C, Lieber E. 2005. Impact of interpreters' approach on Latinas' use of amniocentesis. Health Educ Behav 32(5): 599-612.
53. Press N, Browner C. 1997. Why women say yes to prenatal diagnosis. Soc Sci Med 45(7): 979-989.
54. Reddy U, Wapner R. 2007. Comparison of first and second trimester aneuploidy risk assessment. Clin Obstet Gynecol 30(2): 442-453.
55. Roelofsen EEC, Kamerbeek LI, Tymstra TJ, Beekhuis JR, Mantingh A. 1993. Women's opinions on the offer and use of maternal serum screening. Prenat Diagn 13: 741-747.
56. Rostant K, Steed L, O'Leary P. 2003. Survey of the knowledge, attitudes and experiences of Western Australian women in relation to prenatal screening and diagnostic procedures. Aust N Z J Obstet Gynaecol 43(2): 134-138.
57. Ryder I. 1999. Prenatal screening for Down syndrome: a dilemma for the unsupported midwife. Midwifery 15: 16-23.
58. Sackett D. 1997. Evidence-based medicine. Semin Perinatol 21(1): 3-5.
59. Santalahti P, Aro AR, Hemminki E, Helenius H, Ryynanen M. 1998a. On what grounds do women participate in prenatal screening? Prenat Diagn 18(2): 153-65.
60. Santalahti P, Hemminki E, Latikka A, Ryynanen M. 1998. Women's decision-making in prenatal screening. Soc Sci Med 46(8): 1067-1076.
61. Santalahti P, Hemminki E, Latikka AM, Ryynanen M. 1998b. Women's decision-making in prenatal screening. Soc Sci Med 46(8): 1067-76.
62. Salonen R, Kurki L, Lappalainen M. 1996. Experiences of mothers participating in maternal serum screening for Down's syndrome. Eur J Hum Genet 4(2): 113-119.
63. Seror V, Costet N, Ayme S. 2000. Dépistage prénatal de la trisomie 21 par marqueurs sériques maternels: de l'information à la prise de décision des femmes enceintes. J Gynecol Obstet Biol Reprod 29: 492-500.
64. SOGC. 2007. Déclaration de la SOGC sur l'acc̀es au dépistage géenétique, www.sogc.org/home/pdf/sogc-statement- on-access-to-genetic-screening_f.pdf.
65. Statham H, Green J. 1993. Serum screening for Down's syndrome: some women's experiences. BMJ 307: 174-176.
66. Vassy C. 2005. How prenatal diagnosis became acceptable in France. Trends Biotechnol 23(5): 246-249.
67. Weinans M, Huijssoon A, Tymstra T, Gerrits M, Beekhuis J, Mantingh A. 2000. How women deal with the results of serum screening for Down syndrome in the second trimester of pregnancy. Prenat Diagn 20: 705-708.
68. Wenstrom K. 2005. Evaluation of Down syndrome screening strategies. Semin Perinatol 29(4): 219-224.
69. Wenstrom K, Owen J, Chu D, Boots L. 1997. α-Fetoprotein, free β-human chorionic gonadotropin, and dimeric inhibin A produce the best results in a three-analyte, multiple-marker screening test for fetal Down syndrome. Am J Obstet Gynecol 177(5): 987-991.
70. Williams C, Alderson P, Farsides B. 2002a. Dilemmas encountered by health practitioners offering nuchal translucency screening: a qualitative case study. Prenat Diagn 22(3): 216-220.
71. Williams C, Sandall J, Lewando-Hundt G, Heyman B, Spencer K, Grellier R. 2005. Women as moral pioneers? Experiences of first trimester antenatal screening. Soc Sci Med 61(9): 1983-1992.