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Although most patients diagnosed with a gynecologic cancer receive some counseling about the impact of treatment on their fertility, the majority of patients feel the counseling is inadequate, according to a pilot study presented at the.

The study was designed to quantify individual patient wishes about fertility preservation and the perceived barriers patients may face in getting the information.

In the following interview, MaryAnn Wilbur, MD, MPH, MHS, of the University of Rochester Medical Center in New York, discusses the results.

What does this study add to the literature?

Wilbur: Our study adds value in a patient-centered perspective for patients in the reproductive age range around the barriers to fertility care right after diagnosis of gynecological cancer. The online survey -- 21 questions distributed to 228 patients identified at our institution who were age 18 to 40 and had received a diagnosis of gynecological cancer -- was very quantitative. We were impressed with what the 53 patients who responded said they go through once they receive a gynecological cancer diagnosis.

Although nearly 70% of patients knew cancer treatment impacted their fertility, more than half did not feel they received adequate counseling at the time of diagnosis. We presented quantitative information showing that, not surprisingly, patients experience barriers in economics and time. They felt an overwhelming sense of prioritization.

What was really striking was how they felt they were not honored by physicians. Some patients said physicians never brought up fertility preservation, while others said physicians mentioned it quickly but felt as if they didn't have a choice. They were informed that treatment may make them infertile, but a lack of power to make decisions about their care added to their pain.

Patients understand physicians have limited time. They wanted physicians to honor and acknowledge the situation and make fertility counseling a regular part of care.

How did you come up with the questions for the patient survey?

Wilbur: We went through the literature and found a gap in knowledge – there was no validated survey instrument. We devised survey questions, and then conferred with patients with a known gynecological cancer diagnosis to help us identify potential barriers. Over and over patients felt their physicians consistently did not acknowledge the added burden on the effect of infertility on top of their cancer diagnosis.

How can clinicians best deliver fertility counseling for these patients?

Wilbur: After diagnosing a patient during her reproductive years with a gynecological cancer, it would make a huge difference to acknowledge the burden of diagnosis at this age. Oncologists can put the patient in touch with a fertility specialist, social worker, or community group that handles fertility issues. That simple gesture can soothe a lot of distress.

How can clinicians help patients overcome barriers to fertility preservation?

Wilbur: The economic barrier is a big one. Assisted reproductive technology can be expensive, but patients said they would have found a way to pay for fertility preservation if that was an option. Interestingly, time was identified by patients as the largest barrier. After a gynecological cancer diagnosis, patients have to prioritize their time. They would like the opportunity to ask questions about potential fertility preservation.

Oncologists can acknowledge these barriers and put the patient in touch with fertility resources. We found that 20% of patients had fertility-sparing surgery and 11% tried various methods consisting of either oocyte preservation, ovarian tissue cryopreservation, ovarian transposition, or embryo cryopreservation. Two-thirds did not undergo any fertility preservation.

What are the next steps in this research?

Wilbur: We have garnered more granular data about these patients' fertility experiences through a semi-structured, 30-minute Zoom interview. In hearing each patient's story, we found out that some have reached their fertility goals. Others who did not think they were going to have more children felt that option had been taken off the table. Still others had not had children and really grieved the loss of fertility. In general, they said the interview felt cathartic, and wished this discussion had happened at the time of diagnosis.

We also plan to pilot a support group to find out what is most helpful in the intersection of gynecologic cancer and fertility care.

What's the bottom-line message for practicing oncologists?

Wilbur: For patients in the reproductive age group at the time of gynecologic cancer diagnosis, spend a little time to ask about the added burden of fertility loss. Make it automatic to refer to a fertility specialist, social worker, or social network of people who have experienced similar fertility impacts from a malignancy.

Read the study here.