Stephanie V. Blank, MD
Women with ovarian cancer are uncertain about what to expect after diagnosis, creating additional challenges on top of the cancer itself, according to the findings of a recent survey.
The survey responses also reveal a gap between the information physicians thought they were communicating and the information patients felt they were receiving.
“Facing ovarian cancer can be extremely stressful and anxiety-provoking,” noted Stephanie V. Blank, MD, in a statement. “We can support survivors by better understanding their needs and perspectives, and how these evolve with time.” Blank is professor in the Division of Gynecologic Oncology, Icahn School of Medicine at Mount Sinai in New York City, and director of Women's Health, at the Mount Sinai Downtown-Chelsea Center.
The survey, called Our Way Forward, was conducted by Harris Polls on behalf of TESARO, with input from 2 ovarian cancer advocacy groups: the National Ovarian Cancer Coalition (NOCC) and Ovarian Cancer Research Fund Alliance (OCRFA). Our Way Forward was released online, and included responses taken nationally from 254 women with ovarian cancer and 232 physicians who responded between April and May 2017.
Forty-nine percent of the patients, who were either currently in treatment or had been treated, felt that not being sure of the path forward after diagnosis was very or extremely challenging. A similar number found that not knowing what to expect during treatment (46%) or after treatment (47%) to be very or extremely challenging. This feeling was significantly pronounced in those women surveyed who had experienced a recurrence of their disease. The women in this group were more likely than those who had not had a recurrence to say that they currently feel fear (32% vs 15%), anxiety (36% vs 22%), and uncertainty (31% vs 18%).
courtesy of Our Way Forward
The overwhelming majority (87%) of women who have experienced recurrence report the thought of cancer returning can be overwhelming and more than half (58%) report the period of remission when they are no longer receiving therapy is sometimes worse than going through treatment.
The survey also found gaps in the perception of conversations among patients and healthcare providers. Although 91% of physicians indicated that they discuss expectations for treatment often or at every visit, only 40% of the respondents indicated that expectations were discussed often.
Similar disparities were seen when it came to perceptions of discussions about risk of recurrence and the emotional challenges of ovarian cancer; 34% of healthcare providers reported that they were either “unsure if” or “do not feel” that they give women all of the information they need about ovarian cancer.
Seventy-one percent of patients reported being anxious before visits to healthcare professionals, and 61% of patients said it would be either very or extremely helpful to discuss with their healthcare professionals how to cope with the unknown.
courtesy of Our Way Forward
Mary Lynne Hedley, PhD, president and chief operating officer of TESARO, said, “We hope to continue to work with NOCC and OCRFA to find a way forward on behalf of this underserved community and to strengthen the emotional and educational support that patients and oncologists have as it relates to ovarian cancer, no matter the stage of their disease.”
For more information on the Our Way Forward campaign, survey and resources, including a Patient Discussion Guide, visit www.ourwayforward-oc.com