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GynOnc Pt Survey
Optimizing Outcomes in Gynecological Cancer: Patient Survey Results

Released: September 23, 2021

Expiration: September 22, 2022

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In this commentary, Shannon N. Westin, MD, MPH provides her expert perspectives and insights on results from a patient survey on cancer biomarkers, treatment choices, and patients’ collaboration with their healthcare professional (HCP) to improve clinical and survival outcomes.

Patient Characteristics
We conducted a patient survey in collaboration with Smart Patients, a patient advocacy group, in an attempt to understand how we can optimize clinical outcomes for women with gynecologic cancer. The majority of patients who participated in the survey had a history of ovarian cancer (67%), followed by patients with endometrial cancer (19%). To me, this was an interesting finding because endometrial cancer is certainly the most common of the gynecologic malignancies, but a higher proportion of patients with ovarian cancer participated. Most patients self-identified as non-Hispanic White (88%, n = 84), and 50% (n = 87) indicated the absence of metastatic disease.

Patient Preparedness When Talking to HCPs About Gynecologic Cancer Care
Overall, most survey participants indicated they felt fairly well prepared when talking to their HCP about things such as diagnostics, risk factors, and prognosis; most survey participants indicated they were either somewhat prepared, prepared, or well prepared. Conversely, survey participants indicated they felt less prepared to talk with their doctor about treatment options and the cost of treatment—which I found very interesting—where there was a larger proportion of patients (44%) who were neither prepared nor unprepared to not at all prepared. Survey participants indicated they felt somewhat prepared to well prepared (72%) when talking with their doctor about goals of care and their treatment plan. Thus, this was a group of patients who really knew what they wanted but did not necessarily always know what they were receiving.

Patient Education on Actional Biomarkers in Endometrial and Ovarian Cancers
From a genetic testing standpoint, among patients with endometrial cancer, 46% had not been informed by their clinical care team about microsatellite instability (MSI) or mismatch repair (MMR) protein testing, and among patient with ovarian cancer, 60% and 16% had not been spoken to about homologous recombination deficiency and BRCA mutation testing, respectively. I think this is a reflection of changing guidelines and recommendations regarding the types of testing that should be done for patients with gynecologic cancers, particularly for endometrial cancer where we are seeing an increasing number of options based on MSI/MMR status.

Patient Preferences on Sources of Information
When we looked at where patients are getting their information, survey participants predominantly indicated they were using their doctor and their clinical care team, such as nurses, but they also were looking at different websites, including the National Cancer Institute, patient advocacy groups (Foundation for Women’s Cancer), the American Society of Clinical Oncology, and the American Cancer Society; 54% (n = 78) of survey participants indicated they were using their browsers to find information about their cancer.

Patients’ Considerations and Treatment Choices
Some of the results from the patient survey that I found most interesting were regarding patients’ considerations in the selection of their treatment: what they’re willing to do and what things matter to them. For example, when asked whether they were willing to take a pill vs receiving intravenous treatment, 51% of survey participants indicated that this was somewhat important to very important to them, and 47% indicated that this was neither important nor unimportant, which suggests they were willing to do what was necessary as far as treatment was concerned.

Regarding treatment side effects, such as physical side effects, those were felt to be very important for patients. Most survey participants indicated that physical side effects such as hair loss, nausea, and fatigue were very important, as were the risk of secondary cancers associated with a given treatment. And then, as expected, the likelihood of benefit of therapy was extremely important to this patient population, with 97% of participants indicating this was somewhat important to very important. Other considerations that patients found to be important included taking a treatment for a long duration of time and the downstream side effects of therapy such as emotional or mental side effects (sadness, anxiety, and memory changes).

I was not surprised to see that personal responsibilities ranked highly in survey participants’ considerations about treatment, such as taking care of family. Conversely, at least for patients in this survey, the ability to work was less important for 49% (n = 74) of survey participants. These findings suggest that close to one half did not factor work into their treatment, indicating that perhaps they were willing to take time off work if they could do so. Again, I think it was an interesting population who answered the patient survey. Moreover, looking at things such as convenience, out-of-pocket expenses, the impact on activities of daily life, and the burden to family members, these were found to be very important to survey participants. In my practice, I often ask patients about certain life events and will often try to work around those types of events and make sure, whatever schedule the patients are on for their treatment, that they will still be able to attend those. I think the survey results validated what we currently do for our patients and was glad to see that this was something the survey participants also found to be important to them.

Reflective of the patient population surveyed, fertility was not an important consideration; 85% (n = 74) of participants indicated fertility was not at all important and 6% said it was somewhat unimportant. And I think that’s going to depend on the population surveyed, and maybe if we had a younger patient population, that might have been a different answer.

Patients’ Confidence to Work With Healthcare Team to Improve Their Outcomes
Finally, I found the survey results regarding patients’ confidence in working with their healthcare team to improve outcomes were very eye‑opening. Certainly, approximately 58% (n = 71) of survey participants indicated they felt very confident in their ability to work with their healthcare team to improve outcomes in the management of their gynecologic cancer, suggesting that we’re hitting on-target with the majority of these patients. However, 23% to 29% of survey participants indicated they were not confident in their ability to work with their healthcare team. I think this highlights that we, as HCPs, need to do a better job at making sure that we are asking patients what they think, what they want, what their goals are, and we are engaging them in the process as they’re making their treatment decisions. We want all patients to feel confident that they can work with us in order to choose the best possible therapy option for them.

Final Thoughts and Takeaways
I think that we have a key role in educating our patients about new treatment options, and I think this patient survey highlights a significant unmet need where patients are not hearing about genetic/molecular testing that could potentially affect their treatment choices and outcomes. Also, the fact that many patients do not feel confident in working with their healthcare team really highlights a huge opportunity for us as caregivers of women with gynecologic malignancies.

To learn about health disparities and improving outcomes for all women with gynecologic cancers, visit the full program on the CCO website, titled “Smarter. Stronger. Together. Education and Resources to Optimize Clinical Outcomes in Gynecologic Cancers,” to view short, CME-certified, expert-authored presentations and free downloadable slidesets associated with this discussion.

Your Thoughts
What are your thoughts on this patient survey conducted in women with endometrial, ovarian, and cervical cancers? Please leave your thoughts in the comment box below.

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How often do you recommend MSI/MMR testing for patients with endometrial cancer and BRCA/homologous recombinant deficiency testing for patients with ovarian cancer?
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