A number of authors have developed sets of role descriptions that have been used to classify patients' roles in decisions about their health care as either active, collaborative or passive. We explored the validity of two such measures. Twenty women who had recently had a hysterectomy described their experiences of treatment decision-making in their own words and picked role descriptions from the Control Preferences Scale (Degner, Sloan, J. Clin. Epidemiol. 45 (1992) 941) and Patient Preferences for Control measure (Bradley et al., Fam. Med. 28 (1996) 496), both phrased in the past tense to assess roles played. The women explained why they had picked particular role descriptions. We compared the women's selections from the two measures and considered the relationship between their narrative descriptions and the role descriptors they picked. Several women found it hard to find an appropriate role description among those they were offered. Some picked apparently conflicting statements from the two measures. The role classifications that would be made on the basis of the women's chosen role descriptions did not always seem appropriate when compared with their narrative descriptions of how treatment decisions were reached. Women gave a range of explanations for choosing the role descriptors that they did, and some women who picked different role descriptions gave similar explanations for doing so. These findings suggest that there are problems with the validity of some currently used measures of patients' participation in health care decision-making. Researchers need to pay more attention to the key features of participation in decision-making and develop measures that can distinguish between these. © 2001 Elsevier Science Ltd. All rights reserved.
- patient participation
- control measures