In late 2013, 22 ovarian cancer survivor/focus group participants, two physicians, two medical students and five ovarian cancer survivor advocates gathered at SHARE for a dialogue. The physician-led discussion explored barriers to communication between women facing ovarian cancer and the specialists treating them. Our hope was to better define treatment goals meaningful to patients. The results of this focus group have recently been published in an article in Gynecologic Oncology, the SGO's journal, entitled, "A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care."
The main themes identified during the focus group were barriers to communication, importance of frequent communication between patient and physician regarding those goals, and expectations of treatment changing over time. The focus group dialogue also revealed that the terms progression free survival (PFS) and overall survival (OS) held minimal significance to survivors who voiced a preference for an individualized approach to their care focusing on quality of life.
It is our hope that clinicians will be able to use this information to improve communications with their patients and clinical trial researchers will look into ways to incorporate quality of life measures into future clinical trials.
We're so proud of this collaboration among researchers and survivor advocates, as well as the attention it draws to the expressed needs of ovarian cancer patients! Great work, Andrea Herzberg, Gwen Harding-Peets, Judi Gordon, Lorraine Bajada, Annie Ellis, Dr.Stephanie Blank, Dr. Melissa Frey and medical students Julia Jeffries and Sarah Phillips! Most of all, we are thankful for the focus group participants, without whom this important work would not have been possible.
You can see an abstract of the study here.
Please contact Savannah Shyne at [email protected] if you'd like access to the full text of the study.