Oncologists' Perceptions of Recurrent Ovarian Cancer Patients' Preference for Participation in Treatment Decision Making and Strategies for When and How to Involve Patients in This Process.

OBJECTIVES: The treatment decision-making (TDM) process in the medical encounter in ovarian cancer (OC) is directed by oncologists. There is little information on oncologists' perceptions of this process. Our objectives were to explore oncologists' perceptions concerning (1) patients' preference for involvement in TDM, (2) factors that affect when to introduce this discussion, and (3) strategies used for engaging women in TDM. METHODS: We adopted a qualitative descriptive approach. Individual in-person interviews were used to collect data; themes were identified. RESULTS: Fifteen gynecologic and 5 medical oncologists from Ontario, Canada, participated. We found that oncologists made the assumption that women with recurrent OC were interested in being involved in TDM but rarely reported attempting to validate this assumption. The oncologists timed the initiation of the TDM discussion based on their degree of certainty of recurrent OC and their perception of the patient's readiness to be involved in TDM. Oncologists reported using strategies to engage women such as getting the women to take ownership of the decision, verbalize their priorities, lead the discussions, and giving the opportunity to gather information. CONCLUSIONS: Oncologists need to listen to each patient rather than make assumptions about the person based on her disease.

From rhetoric to reality: including patient voices in supportive cancer care planning.

OBJECTIVE: To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co-ordination. CONTEXT: In 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks, the architects of the new provincial system hoped to broaden participation in decision making and to enhance the responsiveness of decisions to communities. RESEARCH APPROACH: Through a qualitative, multiple case study approach we evaluated the processes of involving patients in network development. In-depth, semi-structured interviews and document analysis were complemented by observations of provincial meetings, regional council and network meetings. RESULTS: The network development processes in the three case study regions reveal a significant gap between intentions to involve patients in health planning and their actual involvement. This gap can be explained by: (i) a lack of clear direction regarding networks and patient participation in these networks; (ii) the dominance of regional cancer centres in network planning activities; and, (iii) the emergence of competing provincial priorities. DISCUSSION: These three trends expose the complexity of the notion of public participation and how it is embedded in social and political contexts. The failed attempt at involving patients in health planning efforts is the result of benign neglect of public participation intents and the social and political contexts in which public and patient participation is meant to occur.

Shared treatment decision making: what does it mean to physicians?

PURPOSE: Physicians are urged to practice shared treatment decision making (STDM), yet this concept is poorly understood. We developed a conceptual framework describing essential characteristics of a shared approach. This study assessed the degree of congruence in the meanings of STDM as described in the framework and as perceived by practicing physicians. METHODS: A cross-sectional survey questionnaire was mailed to eligible Ontario medical and radiation oncologists and surgeons treating women with early-stage breast cancer. Open-ended and structured questions elicited physicians' perceptions of shared decision making. RESULTS: Most study physicians spontaneously described STDM using characteristics identified in the framework as essential to this concept. When presented with clinical examples in which the decision-making roles of physicians and patients were systematically varied, study physicians overwhelmingly identified example 4 as illustrating a shared approach. This example was deliberately constructed to depict STDM as defined in the framework. In addition, more than 85.0% of physicians identified as important to STDM specific patient and physician roles derived from the framework. These included the following: the physician gives information to the patient on treatment benefits and risks; the patient gives information to the physician about her values; the patient and physician discuss treatment options; both agree on the treatment to implement. CONCLUSION: Substantial congruence was found between the meaning of STDM as described in the framework and as perceived by study physicians. This supports use of the framework as a conceptual tool to guide research, compare different treatment decision-making approaches, clarify the meaning of STDM, and enhance its translation into practice.