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

Patient Educ Couns. 2019 Mar;102(3):595-601. doi: 10.1016/j.pec.2018.10.019. Epub 2018 Oct 29.

Abstract

Objective: To investigate women's preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience.

Methods: 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.

Results: 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.

Conclusion: Numeracy, preference for provider-driven decision processes, and language barriers were key drivers of disparities in preference-concordant decision making.

Practice implications: 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.

Keywords: Concordance; Disparities; Patient participation; Patient-centered communication; Preferences; Prenatal genetic testing decision making; Shared decision making.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Black People
  • Communication*
  • Counseling
  • Decision Making*
  • Educational Status
  • Ethnicity
  • Female
  • Genetic Testing*
  • Hispanic or Latino
  • Humans
  • Patient Participation* / statistics & numerical data
  • Patient Preference*
  • Physician-Patient Relations*
  • Prenatal Diagnosis / methods
  • Prenatal Diagnosis / psychology*
  • Randomized Controlled Trials as Topic
  • White People