Interpreting information: what is said, what is heard - a questionnaire study of health professionals and members of the public

Objective To investigate how people perceive some of the words and phrase,, commonly used in prenatal diagnosis counselling. Methods A questionnaire containing 25 questions with forced choice answers was administered in the form of a lecture. Respondents were asked to report how worrying they would find different ways of being told about hypothetical anomalies or risks of anomalies in their baby. 581 questionnaires were completed by 372 health professionals and 209 members of the public. The sample was obtained opportunistically. The exact number of non-responders is not known but is estimated to be less than 5%. Results Respondents reported being particularly worried by the use of genetic jargon and use of the following words: rare, abnormal, syndrome, disorder, anomaly and high risk. They found risk expressed as 1 in X more worrying than when it was expressed as a percentage, and they consistently reacted as if they estimated the chance of an undesired outcome occurring to be greater than that of a desired outcome occurring when both events were equally likely. Conclusions The choice of words used to describe a condition or to inform someone about the level of risk of an adverse event occurring may significantly affect how the person perceive.,, that condition or risk. Copyright (C) 2002 John Wiley Sons, Ltd.