Women’s preferences for and experiences with prenatal genetic testing decision making: Sociodemographic disparities in preference-concordant decision making

• Published in: Patient education and counseling 2019-03, Vol.102 (3), p.595-601
• Main Authors: Molina, Fabiola, Dehlendorf, Christine, Gregorich, Steven E., Kuppermann, Miriam
• Format: Article
• Language: English
• Subjects: Adult; Black People; Communication; Concordance; Counseling; Decision Making; Disparities; Educational Status; Ethnicity; Female; Genetic Testing; Hispanic or Latino; Humans; Patient participation; Patient Participation - statistics & numerical data; Patient Preference; Patient-centered communication; Physician-Patient Relations; Preferences; Prenatal Diagnosis - methods; Prenatal Diagnosis - psychology; Prenatal genetic testing decision making; Randomized Controlled Trials as Topic; Shared decision making; White People
• ISSN: 0738-3991; 1873-5134; 1873-5134
• DOI: 10.1016/j.pec.2018.10.019

•Over half of women did not prefer a shared decision making approach.•There were sociodemographic disparities in experiencing preference concordance.•Numeracy and preference for provider-driven approach mediated disparities.•Language barriers present challenges to preference-concordant decision making. To investigate women’s preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience. We conducted a secondary analysis of data from two randomized trials conducted between 2007–2012. Survey items assessed participants’ preferred approach to decision making and whether they experienced a preference-concordant decision process. Logistic regression estimated relationships between patient characteristics and these outcomes. 56% of women preferred autonomous decision making, 39% preferred shared decision making, and 5% preferred a provider-driven approach. Only 57% experienced preference-concordant decision making. On bivariate analysis, black women, Spanish-speaking Latinas and women with less education were less likely to experience this outcome than white, more educated women. Numeracy and preferring a provider-driven approach fully mediated observed disparities in preference-concordant decision making for most participants, except for Spanish-speaking Latinas, who were still less likely to have experienced this outcome after accounting for these factors. Numeracy, preference for provider-driven decision processes, and language barriers were key drivers of disparities in preference-concordant decision making. Given the values-sensitive and quantitative nature of prenatal testing decisions, nuanced counseling and interventions to address language barriers, numeracy gaps, and decision-making preferences are needed to tailor counseling to patient’s backgrounds and desires.