Objective: Using an interview-guided survey, our descriptive study aimed to document the extent to which cancer patients perceive they are involved in making treatment decisions and the factors that influence patient involvement.
Patients and methods: Our study enrolled patients from a Canadian ambulatory oncology program who were undergoing chemotherapy or radiation therapy, or both, for cancer. The adapted Control Preferences Scale was used to survey perceived and preferred roles in decision-making. The study survey also included items from the Decisional Conflict Scale and the Preparation for Decision-Making Scale.
Results: Of 192 participants, 98 (51%) perceived that they were offered treatment choices. Of those 98, 47 (48%) thought that the options were presented equally. Compared with the patients not offered choices, those who were given choices were less passive (4% vs. 29%, p < 0.001) and more satisfied (100% vs. 95%, p < 0.03) in decision-making. Participants whose preferred and perceived roles were different would have preferred more involvement in decision-making. To attain the preferred involvement, patients wanted to receive more information on treatment options, to be given a choice, to have more discussion with the health care team, and to have providers better listen to their needs.
Conclusions: Only half of surveyed patients thought that they were offered choices for their cancer treatment. When offered choices, patients were more active in decision-making. Further initiatives are required to determine approaches for supporting patients with cancer so that they can be more involved in decision-making.
Keywords: Cancer; decision quality; preferences; role in decision-making; shared decision-making.