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.