Assessing patients’ participation and quality of decision-making: insights from a study of routine practice in diverse settings

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Abstract

In the context of a qualitative study exploring patients’ participation in decision-making, we investigated how people interpret and respond to structured questions about decision-making about their health care. Seventy-four participants who attended consultations in five clinical areas completed structured measures of decision-making and discussed their responses during interviews. They identified a range of decisions as having being made in their consultations. People who picked particular responses on measures of participation in and satisfaction with decision-making gave varied explanations for these, not all of which were consistent with the way their responses are usually interpreted. The interview data suggest that people’s evaluations of decisions to follow a particular course of action were influenced by various factors including what they focused on as the alternative, their perceptions of constraints on choices, and their assessment of how good the best possible solution was. Responses to simple structured measures of participation in and satisfaction with decision-making should be interpreted with caution. They are not reliably attributable to health care providers’ actions and are thus unsuitable for performance assessment purposes.

Introduction

The involvement of patients in decisions about their health care is seen as a component of good quality health care [1], [2], [3], and the importance of patients’ subjective perceptions of health care is now recognised. Reflecting this, there is interest in assessing patients’ participation in decision-making and patients’ perceptions of decision-making for the purposes of assessing the performance of health care providers, and for other initiatives that aim to improve the quality of health care [4], [5], [6].

Various measures of patients’ participation and patients’ perceptions of different aspects of the quality of decision-making have been developed, mainly to evaluate decision aids for patients [7], [8], [9]. Some have been psychometrically validated, but qualitative work with women undergoing hysterectomy recently revealed problems with the interpretation of one widely used measure [10].

We report an investigation of the use of two self-report measures of patients’ perceptions of decision-making (the Control Preferences Scale [11] and Satisfaction with Decision scale [12]) in routine practice across diverse health care settings. The investigation aimed to improve our understanding of how people interpret questions about their roles in treatment decision-making and the quality of decisions about their health care. We also hoped to generate some insights into the kinds of issues that might arise from attempts to use structured questions for patients to assess the quality of decision-making in routine practice. The investigation was conducted in the context of a qualitative study that explored various issues relating to patient participation in decision-making.

Section snippets

Methods

For the overall study, our sampling strategy was designed to identify a range of experiences and views. We selected five clinical areas across which we expected patients’ roles in decision-making to vary: family planning; general practice management of diabetes; homoeopathy; clinical cancer genetics; and specialist treatment for head and neck cancers. Within each area, we sampled health professionals with varied backgrounds and roles, and patients with diverse health problems (Table 1). We

Results

A total of 74 patients from across the five clinical areas returned at least one form (Table 2). Forty four decision forms were that were completed at the first post consultation interview were reviewed during second post consultation interviews.

Discussion and conclusion

Our investigation shows that when asked about decisions made in consultations, people do not always focus on the consideration and selection of treatment or management options. They may also think of judgements about their risk status or diagnosis, health professionals’ explanations or treatment goals. People tend not spontaneously to describe decisions in ways that would allow meaningful assessments of the extent to which they have been offered and considered an appropriate range of possible

Acknowledgements

We thank the health professionals and the people who consulted them for participating in this project. The overall project of which this investigation was a part benefited from input from a number of consumers and health professionals who served on clinical area advisory groups. Sarah Collins and Jon Chatwin contributed to data collection for this study, and Graeme Maclennan provided statistical support. Paul Drew was a valuable member of the project team and provided helpful insights and

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This project was funded by the Department of Health under its Health in Partnership programme (project HS010 RGC0771). The Health Services Research Unit receives funding from the Chief Scientist Office of the Scottish Executive Health Department.

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