Dataset Information

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

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.

SUBMITTER: Molina F

PROVIDER: S-EPMC6421100 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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

Molina Fabiola F Dehlendorf Christine C Gregorich Steven E SE Kuppermann Miriam M

Patient education and counseling 20181029 3

<h4>Objective</h4>To investigate women's preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience.<h4>Methods</h4>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 ...[more]

PMID: 30502029

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Project description:BackgroundDown syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome. Little research has examined how decisions regarding both Down syndrome screening as well as diagnosis are made among women who are currently pregnant and how their decisions are influenced by their social contexts, specifically family and social media, using mixed methods. The study was to test the validity and reliability of a scale that measures pregnant women's attitudes and decision-making concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan.MethodsWe developed an item pool based on a literature review and in-depth interviews with 30 pregnant women recruited at two district hospitals in urban areas. The item pool was reviewed by a panel of experts and then administered to 300 women who had been pregnant for less than 24 weeks and had not received the Down syndrome screening tests. We used item analysis and exploratory factor analysis to validate the scale and test its reliability.ResultsThe initial item pool had 54 items. After the expert review, three items were deleted. After the item analysis, 16 additional items were deleted. Exploratory factor analysis of the remaining items revealed four factors labeled - "Attitudes towards Down syndrome and Screening Tests," "Important others' Attitudes towards Down Syndrome," "Influence of Important Others on Decision-Making," and "Influence of Social Media on Decision-Making" - and 16 of the remaining items had satisfactory loadings on those factors, explaining 72.0% of the total variance. The Cronbach's α values of the dimensions ranged between 0.75 and 0.90, demonstrating satisfactory internal reliability.ConclusionsThe scale has satisfactory validity and reliability, and can be used to understand pregnant women's attitudes and decision-making regarding Down syndrome screening and diagnosis, and to help design tailored consultations for pregnant women in clinical settings.

Project description:BackgroundShared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients' generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients' preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients' specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.MethodsIn Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items. In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis. Differences between the participation preference for different decision contexts were analyzed.ResultsStudy 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001. Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.ConclusionsThe desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients' preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients' individual needs.

Dataset Information

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

Publications

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

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