A review of decision support technologies for amniocentesis

BACKGROUND: There is an increasing interest in designing decision tools [decision support technologies (DSTs)] that support patients when they have to decide about health matters. The purpose of this review was to describe and evaluate existing DSTs for amniocentesis testing. METHODS: Ten medical and psychological databases were searched up to January 2008 and key authors and organizations contacted to identify DSTs for amniocentesis (published or otherwise). DSTs that described amniocentesis testing were included. RESULTS: Six DSTs met the inclusion criteria and were evaluated using the International Patient Decision Aids Standards Instrument. The evaluation suggested that most DSTs provided a satisfactory level of information on the index decision and, on the specific features of a diagnostic test; provided structured guidance in making a decision; were based on scientific evidence and disclosed the funding sources and authors’ credentials. However, most DSTs failed to communicate probabilistic information, to clarify patient values and use plain language. The majority of DSTs did not use a systematic development process. Furthermore, the DSTs’ evaluation often lacked scientific rigour. In most cases, neither the quality nor the effectiveness of the DST could be inferred from the evaluations. CONCLUSIONS: The review highlights variations in the development, evaluation and quality of existing DSTs for amniocentesis. We do not know what impact DSTs may have when implemented in clinical settings. Decisions in this context have high stakes and strong emotional impacts. It is important to ensure that DSTs achieve high standards