Decision making in prenatal testing

Introduction: One of the main objectives of prenatal diagnosis programmes is to ensure women make informed decisions about testing. As few studies have operationalised informed decision making, it is unclear whether or not this objective has been attained. However, evidence suggests that (a) insufficient information is provided to enable informed and autonomous decision making, and (b) women's knowledge of testing is often incomplete. It is unlikely, therefore, that all women make fully informed decisions. Aims: To describe the conditions enabling informed decision making; to operationalise and assess the informed decision making process; to evaluate the efficacy of decision analysis to facilitate informed decision making; to describe the factors associated with prenatal diagnosis decisions. Sample: Data from 128 prenatal diagnosis information giving consultations between a health professional and women receiving a screen positive triple test result were included for analysis. Methods: Theoretical and integrative reviews summarising prior empirical research; observational designs assessing the decision making process; a randomised control trial design evaluating the decision analysis intervention. The following materials were piloted: a checklist of information provided; a coding frame of information utilised; a consent form; a questionnaire completed at two time points. Results: Insufficient information about Down's syndrome and termination was provided by the health professional to enable informed decision making. As many women employed a ‘screening out’ strategy to limit the information for assimilation, not all women made fully informed decisions. In the RCT (n = 106), 17 women chose no further testing. Compared with women receiving routine information, those allocated to the decision analysis consultation made more informed decisions, experienced less decisional conflict, were less falsely reassured and had longer consultations. Perceived social norm, expected-utility values and anxiety predicted women’s test decisions. Discussion: Decision analysis consultations were associated with more informed decisions than routine care. However, additional empirical research is required to ascertain what aspects of the decision analytic technique were associated with the facilitation of informed decision making. Recommended changes to routine clinical practice and women’s role in the consultation will be dependent on these subsequent findings.