Sixty-four percent of ovarian cancer patients are concerned enough about their path forward that they want doctors to discuss the unknowns of the disease with them, according to a survey of patients and doctors.
That figure reflects many patients’ uncertainty about what to expect after they’ve been diagnosed — whether the uncertainly is immediately after they get the news or surface when they’re looking for resources and connections to help them minimize the disease’s burden.
The national survey also showed that about twice as many doctors as patients believe it’s important to discuss the risk of the cancer recurring and the emotional challenges of the disease. The same doctor-patient dichotomy applies to the question of whether expectations of treatment should be discussed at every visit, or at least often.
Tesaro developed the survey, called Our Way Forward, with help from the National Ovarian Cancer Coalition and the Ovarian Cancer Research Fund Alliance. The company develops cancer treatments.
Two hundred fifty-four ovarian cancer patients and 232 ovarian and other cancer specialists took part in the survey between April and May 2017. In addition to gathering patient and doctor thoughts about discussing cancer, the survey was designed to help the two sides identify opportunities to develop educational and support tools for the ovarian cancer community.
Tesaro described its initiative as a call to action to encourage ovarian cancer patients, their loved ones, and healthcare providers to rethink how they discuss the cancer and ways to work together on the disease’s physical and emotional challenges.
“Facing ovarian cancer can be extremely stressful and anxiety-provoking,” Dr. Stephanie V. Blank, a gynecology cancer professor at Mount Sinai Hospital’s Icahn School of Medicine in New York, said in a news release. “We can support survivors by better understanding their needs and perspectives, and how these evolve with time.”
Fifty-three percent of the patients surveyed felt that ovarian cancer had had a severe or very severe impact on their lives. Eighty-seven percent of those whose cancer had recurred said the thought of it returning could overwhelm them.
Improving doctor-patient dialogue is important, according to the survey results. Patients said they craved information from doctors about their treatment, support, the chance of their disease recurring and what will happen then, and what else to expect.
Forty-nine percent of patients who are being treatment or have completed it said the uncertainty they face is very or extremely challenging.
Thirty-four percent of the healthcare providers surveyed said they did not feel they were providing their patients all the information they needed about their disease.
Doctors and patients had different views on the importance of discussing treatments and expectations for managing ovarian cancer.
Ninety-one percent of doctors said it is important to discuss expectations for treatment at every visit, or at least often, compared with 40 percent of patients. In addition, 69 percent of healthcare providers said it is important to talk about the risk of recurrence, compared with 38 percent of patients. And 59 percent of doctors, versus 29 percent of patients, said it is important to discuss the emotional challenges of ovarian cancer.
“We are incredibly grateful for the community’s robust response to the survey,” said Dr. Mary Lynne Hedley, the president of Tesaro. “As an organization, TESARO is committed to being a trusted partner to the ovarian cancer community.”
The company hopes to continue working with the National Ovarian Cancer Coalition and the Ovarian Cancer Research Fund Alliance “to find a way forward on behalf of this underserved community and strengthen the emotional and education support that patients and oncologists [cancer doctors] have as it relates to ovarian cancer, no matter the stage of their disease,” she added.