An ovarian cancer diagnosis can rock women to the core. To help assuage some of that angst, experts say it's vital for oncologists to devote as much time as necessary to guiding a patient through the malady, including thoroughly addressing all questions and concerns about the condition.
At least one study bears that out. Researchers recently announced the results of the Our Way Forward survey, a national survey of patients and health care providers developed to better understand the unmet education and support needs of the advanced ovarian cancer community.
Created with input from leading ovarian cancer advocacy groups-the National Ovarian Cancer Coalition (NOCC) and the Ovarian Cancer Research Fund Alliance (OCRFA)-the results from the survey indicate that regardless of the stage of ovarian cancer, uncertainty exists among patients about what to expect after diagnosis. This includes whether they're initially diagnosed or actively seeking greater resources and connections to help ease the burden of the disease.
Study Specifics
The survey was conducted online between April 13 and May 2, 2017, among 254 women 18+ years of age living in the U.S. who have been diagnosed with ovarian cancer. Survey respondents were selected from individuals who had agreed to participate in surveys through the Harris Poll and their partners or were recruited to participate by NOCC and OCRFA.
Results are representative of only those surveyed. A parallel survey was conducted between April 17 and May 5, 2017, among 232 physicians who treat ovarian cancer patients in the U.S. consisting of 201 medical oncologists and 31 gynecologic oncologists. Survey respondents were selected from physicians who had agreed to participate in surveys through the Harris Poll and their partners.
The study found there are differences in how often patients and health care providers perceive they're having discussions about treatment and expectations for managing ovarian cancer. For instance:
* Ninety-one percent of health care providers (vs. 40% of patients) say they discuss expectations for treatment often or at every visit.
* Sixty-nine percent of health care providers (vs. 38% of patients) say this for discussing the risk of recurrence.
* Fifty-five percent of health care providers (vs. 29% of patients) say this for discussing the emotional challenges of ovarian cancer.
Patients crave information from their health care providers about expectations, treatment, recurrence, and support, the study stated. For example, 61 percent of patients said it would be very or extremely helpful to discuss with their health care provider how to cope with the unknown.
Clinicians Supporting Patients
Oncologist Whitney Graybill, MD, was surprised by how differently patients and health care providers perceived how effectively information is provided and discussed, as reflected in the study.
"Obviously, the disease has a significant impact on patients' lives in terms of treatment and surveillance," she said.
Almost all the patients in the study reported the thought of cancer returning can be overwhelming, noted Graybill, Associate Professor of Gynecologic Oncology and Director of Robotic Surgery at the Medical University of South Carolina, Charleston. "[Physicians] intuitively know that, but it's important to be reminded. We need to give [patients] as much information as possible to help alleviate their fear."
Graybill believes many of her colleagues might feel they're spending ample time walking patients through their condition. "I really think most oncologists try to discuss issues and questions with their patients; but sometimes, if you're in a very busy clinic, physicians might think they've addressed their patients' questions, but they really haven't explained it as well as they could have or met the needs of their patients."
One thing patients can do to enhance the line of communication, she noted, is prepare a list of important questions prior to an appointment with their physician. "That way, patients can make sure their questions and concerns are answered."
Nicole Taylor, PhD, Clinical Assistant Professor, University of Denver, said the gap in how patients perceive the quality of communication versus physicians is somewhat predictable. "Cancer patients often experience uncertainty because there is not a cookie-cutter approach to cancer treatments, and providers are usually not able to offer a direct road map for what to expect, especially with ovarian cancer. There are differences in communication that can exacerbate this issue as well."
Whatever the case, throughout the process, Taylor emphasized it's important to remember that patients often "shut down after hearing their initial diagnosis of cancer. Many details that providers share after saying 'the C word' get lost in the fog. Patients and family members get overwhelmed and worried about the future and may tune out while providers discuss a course of chemotherapy, radiation, or which surgeries to expect."
Another important consideration: for patients, receiving a cancer diagnosis is "a (hopefully) once in a lifetime experience, so it's hugely momentous to them," she noted. Providers, on the other hand, "see many patients every day and might become routine in how they approach delivering bad news or treatment plans," continued Taylor, also Director, Center for Oncology Psychology Excellence, Graduate School of Professional Psychology.
Graybill keeps all of that in mind, striving to have a meaningful conversation with a patient about her diagnosis. It includes a surgical and treatment plan, and how Graybill feels it will impact the patient's quality of life. "Other questions will come up about what happens after they finish treatment, what will surveillance be, and the chance for recurrence," she added. "We have a responsibility to our patients to do everything we can do to educate them about their disease and disease process and to answer questions."
Of course, clarity is a large part of open and effective communication, said Taylor. "Historically, a cancer diagnosis has been such bad news that providers would not even share the news directly." Recent research, she noted, shows the vast majority of patients and caregivers want to hear direct information about their diagnosis and prognosis, but some providers might still provide information in an unclear and indirect way. Consequently, studies like this one, she noted, "show that there is a gap between what providers believe they communicate and what patients hear. Communication skills training, as well as more sensitivity to the psychosocial effects of a cancer diagnosis, can help with this."
Meanwhile, Katina Robison, MD, Medical Oncologist in the Program in Women's Oncology at Women & Infants Hospital of Rhode Island, believes "we have a lot to learn about how to provide survivorship care for women with cancer, particularly ovarian." Along those lines, her Program for Women's Oncology has spent the past year developing a survivorship visit that's unique for women with gynecologic malignancies, she explained.
However, she acknowledged "this is just a step in the right direction. We are continuing to work with patients to determine the needs they have and conducting research studies to evaluate how these needs might change over time." Robison, also Assistant Professor of Obstetrics and Gynecology at The Warren Alpert Medical School at Brown University, noted the NIH has put out a call for research in survivorship.
Future Directions in Survivorship
While Robison pointed out that studies like Our Way Forward help identify problems, "we need studies focused on implementing interventions aimed at decreasing the anxiety and uncertainty of women facing ovarian cancer." She believes one of the key factors in conducting good research that will make an impact in the future is including patients as part of the study team that will design the study. "We need to continue to conduct research on identifying the best methods of providing survivorship care for women with ovarian cancer and in turn we may be able to decrease the uncertainty and anxiety associated with the diagnosis."
Nevertheless, despite whatever improvements that still are required, Taylor noted she's seen a shift in recent years, with more attention being paid to the psychosocial effects of cancer. Recently, she noted, some accreditation for cancer centers has been linked to whether they're screening patients for distress and offering resources. For example, psychosocial professionals like psychologists and social workers at cancer centers and clinics are becoming more mainstream, she remarked.
Furthermore, while the results of the study indicated that fear, anxiety, and uncertainty are quite common, Taylor added that depression, traumatic reactions, and changes in interpersonal relationships are also part of a typical reaction to cancer.
"These effects are seen in cancer patients, as well as their family members. Attending to these psychological and emotional effects is essential to ensure a good quality of life." Patients are more likely to adhere to their treatments if they're not depressed and anxious, Taylor observed.
Chuck Green is a contributing writer.
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