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APHA Scientific Session and Event Listing

Marla L. Clayman, PhD, MPH¹, Neeraj K. Arora, PhD², Susan Berkowitz, PhD³, Cynthia Robins, PhD³, Ingrid Oakley-Girvan, PhD, MPH⁴, and Steve Clauser, PhD². (1) Robert H. Lurie Comprehensive Cancer Center of Northwestern University &, Division of General Internal Medicine, 676 N. Saint Clair, Suite 200, Chicago, IL 60611, 312 695 0278, m-clayman@northwestern.edu, (2) Applied Research Program, National Cancer Institute, Outcomes Research Branch, 6130 Executive Boulevard, Rockville, MD 20852, (3) Westat, 1650 Research Boulevard, Rockville, MD 20850, (4) Northern California Cancer Center, 2201 Walnut Avenue, Suite 300, Fremont, CA 94538

Objective: To determine how cancer survivors define what “participation” in their cancer care means.

Methods: Following a quantitative study of 774 cancer survivors, 30 respondents took part in focus groups designed to obtain more detailed information about patients' experiences of care. Patients had been asked to complete a decisional preference scale, with 5 response options ranging from “I prefer my doctor to make all of my medical decisions” to “I prefer to make all of my medical decisions on my own.” These responses have been labeled by previous researchers as indications of patients who prefer “active,” “shared,” or “passive” involvement in decision-making. Verbatim transcripts of the focus groups were used for analysis.

Results: Four focus groups were conducted: one each with “active” and “passive” patients; and two with patients who preferred “shared” decision-making. Across all groups, patients defined “participation” as knowing the options or having access to information, and most patients felt that they had participated in this way. However, the “shared” and “active groups” had additional definitions of participation than those present in the “passive” group, namely independent information seeking and soliciting second opinions. Patients in each group felt that they had participated in their decision-making.

Conclusion: Although there are differences in how patients define participation in care, patients who do not prefer primary responsibility for decision-making do not seem to be “passive.” Rather, they fulfill their own conception of what it means to participate. Hence, the researcher-created label of a “passive” patient is not consistent with patients' viewpoints.

Learning Objectives: At the conclusion of the session, the participant will be able to

• Describe differences in cancer survivors' perceptions of participation in care.
• Articulate problems with the use of the term "passive" to describe some cancer survivors.

Keywords: Cancer, Patient Perspective

Presenting author's disclosure statement:

Any relevant financial relationships? No