Skip to main content
Top
Published in: BMC Pregnancy and Childbirth 1/2017

Open Access 01-12-2017 | Research article

Use of a patient decision aid for prenatal screening for Down syndrome: what do pregnant women say?

Authors: Maria Esther Leiva Portocarrero, Anik M. C. Giguère, Johanie Lépine, Mirjam M. Garvelink, Hubert Robitaille, Agathe Delanoë, Isabelle Lévesque, Brenda J. Wilson, François Rousseau, France Légaré

Published in: BMC Pregnancy and Childbirth | Issue 1/2017

Login to get access

Abstract

Background

Patient decision aids (PtDAs) help people make difficult, values-sensitive decisions. Prenatal screening for assessing the risk of genetic conditions in the fetus is one such decision and patient decision aids are rarely used in this clinical context. We sought to identify factors influencing pregnant women’s use of a patient decision aid for deciding about prenatal screening for Down syndrome (DS).

Methods

This qualitative study was embedded in a sequential mixed-methods research program whose main aim is to implement shared decision-making (SDM) in the context of prenatal screening for DS in the province of Quebec, Canada. We planned to recruit a purposive sample of 45 pregnant women with low-risk pregnancy consulting for prenatal care at three clinical sites. Participating women watched a video depicting a prenatal care follow-up during which a pregnant woman, her partner and a health professional used a PtDA to decide about prenatal screening for DS. The women were then interviewed about factors that would influence the use of this PtDA using questions based on the Theoretical Domains Framework (TDF). We performed content analysis of transcribed verbatim interviews.

Results

Out of 216 eligible women, 100 agreed to participate (46% response rate) and 46 were interviewed. Regarding the type of health professional responsible for their prenatal care, 19 participants (41%) reported having made a decision about prenatal screening for DS with an obstetrician-gynecologist, 13 (28%) with a midwife, 12 (26%) with a family physician, and two (4%) decided on their own. We identified 54 factors that were mapped onto nine of the 12 TDF domains. The three most frequently-mentioned were: opinion of the pregnant woman’s partner (n = 33, 72%), presentation of the PtDA by health professional and a discussion (n = 27, 72%), and not having encountered a PtDA (n = 26, 57%).

Conclusion

This study allowed us to identify factors influencing pregnant women’s use of a PtDA for prenatal screening for DS. Use of a PtDA by health professionals and patients is one step in providing the needed decision support and our study results will allow us to design an effective implementation strategy for PtDAs for prenatal screening for DS.
Appendix
Available only for authorised users
Literature
1.
2.
go back to reference O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-Thomas H, Holmes-Rovner M, Barry M, Jones J. Decision aids for patients facing health treatment or screening decisions: systematic review [see comments]. BMJ. 1999;319(7212):731–4.CrossRefPubMedPubMedCentral O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-Thomas H, Holmes-Rovner M, Barry M, Jones J. Decision aids for patients facing health treatment or screening decisions: systematic review [see comments]. BMJ. 1999;319(7212):731–4.CrossRefPubMedPubMedCentral
3.
go back to reference St-Jacques S, Grenier S, Charland M, Forest JC, Rousseau F, Légaré F. Decisional needs assessment regarding Down syndrome prenatal testing: a systematic review of the perceptions of women, their partners and health professionals. Prenat Diagn. 2008;28(13):1183–203. St-Jacques S, Grenier S, Charland M, Forest JC, Rousseau F, Légaré F. Decisional needs assessment regarding Down syndrome prenatal testing: a systematic review of the perceptions of women, their partners and health professionals. Prenat Diagn. 2008;28(13):1183–203.
5.
go back to reference Politi MC, Dizon DS, Frosch DL, Kuzemchak MD, Stiggelbout AM. Importance of clarifying patients’ desired role in shared decision making to match their level of engagement with their preferences. BMJ. 2013;347:f7066.CrossRefPubMed Politi MC, Dizon DS, Frosch DL, Kuzemchak MD, Stiggelbout AM. Importance of clarifying patients’ desired role in shared decision making to match their level of engagement with their preferences. BMJ. 2013;347:f7066.CrossRefPubMed
6.
go back to reference Asplin N, Wessel H, Marions L, Georgsson Ohman S. Pregnant women’s experiences, needs, and preferences regarding information about malformations detected by ultrasound scan. Sex Reprod Healthc. 2012;3(2):73–8.CrossRefPubMed Asplin N, Wessel H, Marions L, Georgsson Ohman S. Pregnant women’s experiences, needs, and preferences regarding information about malformations detected by ultrasound scan. Sex Reprod Healthc. 2012;3(2):73–8.CrossRefPubMed
7.
go back to reference Légaré F, Kearing S, Clay K, Gagnon S, D’Amours D, Rousseau M, O’Connor A. Are you SURE?: Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician. 2010;56(8):e308–14. Légaré F, Kearing S, Clay K, Gagnon S, D’Amours D, Rousseau M, O’Connor A. Are you SURE?: Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician. 2010;56(8):e308–14.
8.
go back to reference Waldenstrom U, Rudman A, Hildingsson I. Intrapartum and postpartum care in Sweden: women’s opinions and risk factors for not being satisfied. Acta Obstet Gynecol Scand. 2006;85(5):551–60.CrossRefPubMed Waldenstrom U, Rudman A, Hildingsson I. Intrapartum and postpartum care in Sweden: women’s opinions and risk factors for not being satisfied. Acta Obstet Gynecol Scand. 2006;85(5):551–60.CrossRefPubMed
9.
go back to reference Brown S, Lumley J. Satisfaction with care in labor and birth: a survey of 790 Australian women. Birth. 1994;21(1):4–13.CrossRefPubMed Brown S, Lumley J. Satisfaction with care in labor and birth: a survey of 790 Australian women. Birth. 1994;21(1):4–13.CrossRefPubMed
10.
go back to reference Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process with outcome. Patient Educ Couns. 2003;50(3):323–9.CrossRefPubMed Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process with outcome. Patient Educ Couns. 2003;50(3):323–9.CrossRefPubMed
11.
go back to reference Dahl K, Hvidman L, Jorgensen FS, Henriques C, Olesen F, Kjaergaard H, Kesmodel US. First-trimester Down syndrome screening: pregnant women’s knowledge. Ultrasound Obstet Gynecol. 2011;38(2):145–51.CrossRefPubMed Dahl K, Hvidman L, Jorgensen FS, Henriques C, Olesen F, Kjaergaard H, Kesmodel US. First-trimester Down syndrome screening: pregnant women’s knowledge. Ultrasound Obstet Gynecol. 2011;38(2):145–51.CrossRefPubMed
12.
go back to reference Godin G. Les comportements dans le domaine de la santé: comprendre pour mieux intervenir. Montreal: Les Presses de l’Université de Montréal; 2012. Godin G. Les comportements dans le domaine de la santé: comprendre pour mieux intervenir. Montreal: Les Presses de l’Université de Montréal; 2012.
13.
go back to reference Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:CD001431. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:CD001431.
14.
go back to reference Vlemmix F, Warendorf JK, Rosman AN, Kok M, Mol BW, Morris JM, Nassar N. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG. 2013;120(3):257–66.CrossRefPubMed Vlemmix F, Warendorf JK, Rosman AN, Kok M, Mol BW, Morris JM, Nassar N. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG. 2013;120(3):257–66.CrossRefPubMed
15.
go back to reference Harter M, van der Weijden T, Elwyn G. Policy and practice developments in the implementation of shared decision making: an international perspective. Z Evid Fortbild Qual Gesundhwes. 2011;105(4):229–33.CrossRefPubMed Harter M, van der Weijden T, Elwyn G. Policy and practice developments in the implementation of shared decision making: an international perspective. Z Evid Fortbild Qual Gesundhwes. 2011;105(4):229–33.CrossRefPubMed
16.
go back to reference Légaré F, Elwyn G, Fishbein M, Fremont P, Frosch D, Gagnon MP, Kenny DA, Labrecque M, Stacey D, St-Jacques S, et al. Translating shared decision-making into health care clinical practices: Proof of concepts. Implement Sci. 2008;3:2. Légaré F, Elwyn G, Fishbein M, Fremont P, Frosch D, Gagnon MP, Kenny DA, Labrecque M, Stacey D, St-Jacques S, et al. Translating shared decision-making into health care clinical practices: Proof of concepts. Implement Sci. 2008;3:2.
17.
go back to reference Couet N, Desroches S, Robitaille H, Vaillancourt H, Leblanc A, Turcotte S,Elwyn G, Légaré F. Assessments of the extent to which health-care providers involve patients in decision making: a systematic review of studies using the OPTION instrument. Health Expect. 2015;18(4):542–61. Couet N, Desroches S, Robitaille H, Vaillancourt H, Leblanc A, Turcotte S,Elwyn G, Légaré F. Assessments of the extent to which health-care providers involve patients in decision making: a systematic review of studies using the OPTION instrument. Health Expect. 2015;18(4):542–61.
18.
go back to reference Légaré F, Ratte S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns. 2008;73(3):526–35. Légaré F, Ratte S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns. 2008;73(3):526–35.
20.
go back to reference Rosenblatt RA, Dobie SA, Hart LG, Schneeweiss R, Gould D, Raine TR, Benedetti TJ, Pirani MJ, Perrin EB. Interspecialty differences in the obstetric care of low-risk women. Am J Public Health. 1997;87(3):344–51.CrossRefPubMedPubMedCentral Rosenblatt RA, Dobie SA, Hart LG, Schneeweiss R, Gould D, Raine TR, Benedetti TJ, Pirani MJ, Perrin EB. Interspecialty differences in the obstetric care of low-risk women. Am J Public Health. 1997;87(3):344–51.CrossRefPubMedPubMedCentral
21.
go back to reference Hollowell J, Li Y, Malouf R, Buchanan J. Women’s birth place preferences in the United Kingdom: a systematic review and narrative synthesis of the quantitative literature. BMC Pregnancy Childbirth. 2016;16(1):213.CrossRefPubMedPubMedCentral Hollowell J, Li Y, Malouf R, Buchanan J. Women’s birth place preferences in the United Kingdom: a systematic review and narrative synthesis of the quantitative literature. BMC Pregnancy Childbirth. 2016;16(1):213.CrossRefPubMedPubMedCentral
22.
go back to reference Chalmers B, Dzakpasu S, Heaman M, Kaczorowski J; for the Maternity Experiences Study Group of the Canadian Perinatal Surveillance System, Public Health Agency of Canada. The Canadian Maternity Experiences Survey: an overview of findings. J Obstet Gynaecol Can. 2008;30(3):217–28. Chalmers B, Dzakpasu S, Heaman M, Kaczorowski J; for the Maternity Experiences Study Group of the Canadian Perinatal Surveillance System, Public Health Agency of Canada. The Canadian Maternity Experiences Survey: an overview of findings. J Obstet Gynaecol Can. 2008;30(3):217–28.
23.
go back to reference Guest G. How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability. Field Methods. 2006;18:59–82.CrossRef Guest G. How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability. Field Methods. 2006;18:59–82.CrossRef
24.
go back to reference Huijg JM, Gebhardt WA, Dusseldorp E, Verheijden MW, van der Zouwe N, Middelkoop BJ, Crone MR. Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework. Implement Sci. 2014;9:33.CrossRefPubMedPubMedCentral Huijg JM, Gebhardt WA, Dusseldorp E, Verheijden MW, van der Zouwe N, Middelkoop BJ, Crone MR. Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework. Implement Sci. 2014;9:33.CrossRefPubMedPubMedCentral
25.
go back to reference Francis JJ, Stockton C, Eccles MP, Johnston M, Cuthbertson BH, Grimshaw JM, Hyde C, Tinmouth A, Stanworth SJ. Evidence-based selection of theories for designing behaviour change interventions: using methods based on theoretical construct domains to understand clinicians’ blood transfusion behaviour. Br J Health Psychol. 2009;14(Pt 4):625–46.CrossRefPubMed Francis JJ, Stockton C, Eccles MP, Johnston M, Cuthbertson BH, Grimshaw JM, Hyde C, Tinmouth A, Stanworth SJ. Evidence-based selection of theories for designing behaviour change interventions: using methods based on theoretical construct domains to understand clinicians’ blood transfusion behaviour. Br J Health Psychol. 2009;14(Pt 4):625–46.CrossRefPubMed
26.
go back to reference Michie S, Johnston M, Abraham C, Lawton R, Parker D, Walker A, Psychological Theory G. Making psychological theory useful for implementing evidence based practice: a consensus approach. Qual Saf Health Care. 2005;14(1):26–33.CrossRefPubMedPubMedCentral Michie S, Johnston M, Abraham C, Lawton R, Parker D, Walker A, Psychological Theory G. Making psychological theory useful for implementing evidence based practice: a consensus approach. Qual Saf Health Care. 2005;14(1):26–33.CrossRefPubMedPubMedCentral
27.
28.
go back to reference Cotter KL, Smokowski PR. Perceived Peer Delinquency and Externalizing Behavior Among Rural Youth: The Role of Descriptive Norms and Internalizing Symptoms. J Youth Adolesc. J Youth Adolesc. 2016;45(3):520–31. Cotter KL, Smokowski PR. Perceived Peer Delinquency and Externalizing Behavior Among Rural Youth: The Role of Descriptive Norms and Internalizing Symptoms. J Youth Adolesc. J Youth Adolesc. 2016;45(3):520–31.
29.
go back to reference Girard C, Charbonneau AB, Payeur FF, Azeredo AC. Le bilan démographique du Québec. Quebec: Institut de la statistique du Québec; 2015. p. 168. Girard C, Charbonneau AB, Payeur FF, Azeredo AC. Le bilan démographique du Québec. Quebec: Institut de la statistique du Québec; 2015. p. 168.
30.
go back to reference Gagnon M, Légaré F, Labrecque M, Frémont P, Cauchon M, Desmartis M. Perceived barriers to completing an e-learning program on evidence-based medicine. Inform Prim Care. 2007;15:83–91.PubMed Gagnon M, Légaré F, Labrecque M, Frémont P, Cauchon M, Desmartis M. Perceived barriers to completing an e-learning program on evidence-based medicine. Inform Prim Care. 2007;15:83–91.PubMed
31.
go back to reference Conner M, Armitage CJ. Attitude ambivalence. New York: Psychology Press; 2008. Conner M, Armitage CJ. Attitude ambivalence. New York: Psychology Press; 2008.
32.
go back to reference Hohman ZP, Crano WD, Siegel JT, Alvaro EM. Attitude ambivalence, friend norms, and adolescent drug use. Prev Sci. 2014;15(1):65–74. Hohman ZP, Crano WD, Siegel JT, Alvaro EM. Attitude ambivalence, friend norms, and adolescent drug use. Prev Sci. 2014;15(1):65–74.
33.
go back to reference O’Connor AM, Wennberg JE, Légaré F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Aff (Millwood). 2007;26(3):716–25. O’Connor AM, Wennberg JE, Légaré F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Aff (Millwood). 2007;26(3):716–25.
34.
go back to reference Garvelink MM, ter Kuile MM, Stiggelbout AM, de Vries M. Values clarification in a decision aid about fertility preservation: does it add to information provision? BMC Med Inform Decis Mak. 2014;14:68.CrossRefPubMedPubMedCentral Garvelink MM, ter Kuile MM, Stiggelbout AM, de Vries M. Values clarification in a decision aid about fertility preservation: does it add to information provision? BMC Med Inform Decis Mak. 2014;14:68.CrossRefPubMedPubMedCentral
35.
go back to reference Stirling C, Lloyd B, Scott J, Abbey J, Croft T, Robinson A. A qualitative study of professional and client perspectives on information flows and decision aid use. BMC Med Inform Decis Mak. 2012;12:26.CrossRefPubMedPubMedCentral Stirling C, Lloyd B, Scott J, Abbey J, Croft T, Robinson A. A qualitative study of professional and client perspectives on information flows and decision aid use. BMC Med Inform Decis Mak. 2012;12:26.CrossRefPubMedPubMedCentral
36.
go back to reference Shaffer V. Are patient decision aids effective? Insight from revisiting the debate between correspondence and coherence theories of judgement. Judgm Decis Mak. 2009;4(2):141–6. Shaffer V. Are patient decision aids effective? Insight from revisiting the debate between correspondence and coherence theories of judgement. Judgm Decis Mak. 2009;4(2):141–6.
37.
go back to reference Kasper J, Kopke S, Muhlhauser I, Nubling M, Heesen C. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol. 2008;15(12):1345–52.CrossRefPubMed Kasper J, Kopke S, Muhlhauser I, Nubling M, Heesen C. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol. 2008;15(12):1345–52.CrossRefPubMed
38.
go back to reference Nassar N, Roberts CL, Raynes-Greenow CH, Barratt A, Peat B, Decision Aid for Breech Presentation Trial C. Evaluation of a decision aid for women with breech presentation at term: a randomised controlled trial [ISRCTN14570598]. BJOG. 2007;114(3):325–33.CrossRefPubMedPubMedCentral Nassar N, Roberts CL, Raynes-Greenow CH, Barratt A, Peat B, Decision Aid for Breech Presentation Trial C. Evaluation of a decision aid for women with breech presentation at term: a randomised controlled trial [ISRCTN14570598]. BJOG. 2007;114(3):325–33.CrossRefPubMedPubMedCentral
39.
go back to reference Collins ED, Moore CP, Clay KF, Kearing SA, O’Connor AM, Llewellyn-Thomas HA, Barth Jr RJ, Sepucha KR. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol. 2009;27(4):519–25.CrossRefPubMed Collins ED, Moore CP, Clay KF, Kearing SA, O’Connor AM, Llewellyn-Thomas HA, Barth Jr RJ, Sepucha KR. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol. 2009;27(4):519–25.CrossRefPubMed
40.
go back to reference Légaré F, Moumjid-Ferdjaoui N, Drolet R, Stacey D, Harter M, Bastian H, Beaulieu MD, Borduas F, Charles C, Coulter A, et al. Core competencies for shared decision making training programs: insights from an international, interdisciplinary working group. J Contin Educ Health Prof. 2013;33(4):267–73. Légaré F, Moumjid-Ferdjaoui N, Drolet R, Stacey D, Harter M, Bastian H, Beaulieu MD, Borduas F, Charles C, Coulter A, et al. Core competencies for shared decision making training programs: insights from an international, interdisciplinary working group. J Contin Educ Health Prof. 2013;33(4):267–73.
41.
go back to reference Lloyd A, Joseph-Williams N, Edwards A, Rix A, Elwyn G. Patchy ‘coherence’: using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC). Implement Sci. 2013;8:102.CrossRefPubMedPubMedCentral Lloyd A, Joseph-Williams N, Edwards A, Rix A, Elwyn G. Patchy ‘coherence’: using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC). Implement Sci. 2013;8:102.CrossRefPubMedPubMedCentral
43.
go back to reference Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, Biesecker BB. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. Am J Med Genet. 2002;112(4):369–78.CrossRefPubMed Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, Biesecker BB. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. Am J Med Genet. 2002;112(4):369–78.CrossRefPubMed
44.
go back to reference Seavilleklein V. Challenging the rhetoric of choice in prenatal screening. Bioethics. 2009;23(1):68–77.CrossRefPubMed Seavilleklein V. Challenging the rhetoric of choice in prenatal screening. Bioethics. 2009;23(1):68–77.CrossRefPubMed
Metadata
Title
Use of a patient decision aid for prenatal screening for Down syndrome: what do pregnant women say?
Authors
Maria Esther Leiva Portocarrero
Anik M. C. Giguère
Johanie Lépine
Mirjam M. Garvelink
Hubert Robitaille
Agathe Delanoë
Isabelle Lévesque
Brenda J. Wilson
François Rousseau
France Légaré
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Pregnancy and Childbirth / Issue 1/2017
Electronic ISSN: 1471-2393
DOI
https://doi.org/10.1186/s12884-017-1273-0

Other articles of this Issue 1/2017

BMC Pregnancy and Childbirth 1/2017 Go to the issue