A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care

Abstract Objectives A survey of the Ovarian Cancer National Alliance revealed a communication gap between physicians and survivors. This qualitative study explored the space between perceptions in hopes of better defining treatment endpoints meaningful to treating physicians and their patients. Methods A focus group of ovarian cancer survivors (n=22) was assembled via the survivor support network SHARE. A physician-guided session explored expectations of treatment, perceived outcomes, toxicity thresholds and decision making. The session was recorded, transcribed and coded. Common themes were identified and used to perform intra-case analysis by two independent reviewers. Results The main themes identified were barriers to communication, importance of frequent communication between patient and physician regarding goals, and expectations of treatment changing with position along the treatment continuum. One hundred percent of participants identified communication with their physician as an essential element in determining treatment course. However, only 14% reported having a discussion about goals, values and perceptions with their physician preceding treatment decisions. Participants reported that the terms progression free and overall survival held minimal significance for them and instead they preferred an individualized approach to care focusing on quality of life. Many women underreported side effects with reasons ranging from fear of dose reductions and additional tests to forgetting about symptoms due to anxiety. Conclusions An objective measure of treatment success meaningful to survivors, physicians and regulators is, at present, elusive and may not exist. Ideally, future trial design would place equal weight on quantitative and qualitative measures and include information about goals of treatment.