Women's preferences for and views on decision-making for diagnostic tests
Introduction
Decision-making shared by patients and doctors is advocated to involve patients in decisions about their care (Bachmann, 2001; Coulter, 1999; Emmanuel & Emmanuel, 1992). However, there remains no one standard definition of shared decision-making (Charles, Gafni, & Whelan, 1997). Furthermore, advocating shared decision-making ignores variation in patients’ preferences for involvement in decision-making (Bilodeau & Degner, 1996; Blanchard, Labrecque, Ruckdeschel, & Blanchard, 1998; Davison, Degner, & Morgan, 1995; Degner & Sloan, 1992; Hack, Degner, & Dyck, 1994; McKinstry, 2002; Rothenbacher, Lutz, & Porzsolt, 1997; Stiggelbout & Kiebert, 1997) and that involving patients in decision-making to a greater or lesser extent that they want may have negative consequences, such as increased anxiety.
There is also a lack of standardisation in the definitions of other decision-making roles. While this is problematic in terms of research into patients’ preferences for healthcare decision-making, it is of particular concern in the clinical setting where doctors need valid and reliable ways of eliciting patient preferences in order to involve patients to the extent they want in decision-making.
Preferences for involvement in decision-making have been measured using dichotomous roles (Cassileth, Zupkins, Sutton-Smith, & March, 1980); likert scales (Krantz, Baum, & Wideman, 1980; Smith, Wallston, Wallston, Forsberg, & King, 1984); q-sort (Dennis, 1987); role lists (Larsson, Svardsudd, Wedel, & Saljo, 1989; Strull, Lo, & Charles, 1984; Sutherland, Llewellyn-Thomas, Lockwood, & Tritchler, 1989) and rating scales (Ende, Kazis, Ash, & Moskowitz, 1989).
One frequently used approach is quantitative self-report measures (Bradley, Zia, & Hamilton, 1996; Degner & Sloan, 1992). These measures require people to select their preferred level of involvement from among a list of possible roles. One of the first such measures to be published was the Control Preferences Scale (CPS, Degner & Sloan, 1992), which at the time represented a leap forward in decision-making research. It uses five cards, in a series of two-card comparisons, to elicit respondents’ desired role in decision-making. Initially developed using analysis of the way treatment decisions are made by patients, it has been used to measure preferences in patient and non-patient populations (Bilodeau & Degner, 1996; Davison et al., 1995; Degner et al., 1997; Degner & Sloan, 1992; Hack et al., 1994).
Recently, concerns have been raised about the validity and reliability of role label measures such as the CPS and about the lack of standardisation between them (Entwistle, Skea, & O’Donnell, 2001). We could find no published study that has assessed the use of a quantitative role label measure in eliciting preferences for participation in decisions about diagnostic tests. As the CPS is a commonly used self-report measure, we decided to assess its use in test decision-making.
Consumers’ preferences for involvement in decision-making about medical tests have largely been ignored in the published literature, despite a recent population-based finding that most women want to participate in such decisions (Davey et al., 2002). As such, little is known about how people actually perceive decision-making for diagnostic tests; whether their preferred role changes between tests and over time; why they prefer a particular role; and what, if anything, influences their preference. Such information is necessary if healthcare providers are to assist patients to participate in decision-making about which tests (if any) to undergo.
This study used a qualitative methodology to undertake a detailed examination of women's views about their involvement in decision-making about diagnostic tests. We were particularly interested in exploring whether the CPS, developed for decision-making about treatment, was applicable to women's thinking about diagnostic tests. The aims of the study were to (a) compare women's preferred decision-making role for cholesterol tests and diagnostic mammography; (b) compare the CPS with semi-structured questions for eliciting preferences for involvement in test decision-making; and (c) elicit women's views on decision-making for diagnostic tests.
Section snippets
Methods
Our sample was 37 women aged 30–69 years recruited at the conclusion of a population-based telephone survey of 652 women on their decision-making and information preferences (Davey et al., 2002). For the parent survey, households with a listed telephone number in New South Wales were randomly identified, and if a woman in this household was aged between 30 and 69 years (inclusive) and spoke English she was recruited. If more than one woman fitting these criteria lived at the house, one was
Results
A summary of the demographic characteristics of the 37 participants is shown in Table 1. Unless reported, there were no important differences in responses between participants younger than 50 and those 50 and older or between participants with and without experience of breast symptoms or disease.
Analysis of the transcripts suggested that a qualitative approach was more sensitive for eliciting preferences than the CPS. It also revealed three issues associated with the process of decision-making
Measuring preferences for decision-making role
Previous research has in part attributed problems with the use of the CPS for eliciting treatment decision-making preferences to a lack of validity (Entwistle et al., 2001). The current study complements the findings of this previous work and expands the critique to the area of decision-making for diagnostic tests. In addition, the findings suggest that a more appropriate explanation for the problems of the CPS in eliciting decision-making preferences may be that the role label approach is
Limitations
Any conclusions made from this study need to take into account the limitations resulting from the sample selected. Compared to the general population, interview participants were more likely to be older, live in a metropolitan area and have post-school qualifications. However, in general it is unlikely that the differences between the interview sample and population are of practical importance, as demographic factors explain little of the variance in preferences for involvement in
Conclusion
This is the first study to elicit in-depth information about women's preferences for involvement in, and opinions about, decision-making for diagnostic tests. It builds on a population-based telephone survey that showed most women want to participate in decisions about medical tests (Davey et al., 2002). The findings of the current study suggest that the role label approach, often used to elicit decision-making preferences, is too simplistic to capture the complexity involved in medical
Acknowledgements
The authors would like to thank the women who participated in the research. This research was supported by a grant from the National Health and Medical Research Council, Australia.
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