Fertility Preservation in Cancer Often Not Discussed: Why?

Roxanne Nelson, RN, BSN

November 14, 2019

"The failure of oncologists to engage with fertility is truly a failure, because it is not a lack of available information or knowledge, it's more the physician's lack of interest, lack of accessing available information, lack of acting on it, and a lack of patience to actually take the initiative."

The sentiments expressed above came from a Canadian oncologist, one of a group of 22 clinicians working at cancer centers and community hospitals who participated in a recent study. It was a qualitative study, which set out to examine clinician perspectives on barriers to discussing infertility and fertility preservation with young women with cancer.

The results show that there are many barriers in place.

"While clinicians acknowledged the importance of fertility preservation discussions, most reported feeling unprepared to discuss it with patients with cancer," say the authors, led by Andrea Covelli, MD, PhD, from the department of surgery at the University of Toronto, Canada.

The study was published online November 6 in JAMA Network Open.

"Devastating Adverse Effect"

Infertility can be a devastating adverse effect of cancer treatment for young women, the authors say. Clinical guidelines recommend that clinicians discuss the impact of cancer treatment on fertility and the possibilities for fertility preservation, and such guidelines have been in place for some time now. The first guidelines on this topic from the American Society of Clinical Oncology were published in 2006 and updated in 2013.

Despite the guidelines, however, nearly 50% of young women with cancer remain uninformed, the authors note.

In their study, they set out to learn more about the experiences and perspectives of clinicians who treat young women with cancer who might need fertility preservation.

Interviews were conducted with 22 clinicians, including 8 medical oncologists, 4 surgical oncologists, 4 fertility specialists, 3 hematology and oncology specialists, and 3 nurse practitioners or clinician nurse specialists. Of this group, 17 clinicians were women and 5 were men, and the median time in practice was 10 years.

The first barrier that the study identified was a lack of familiarity with fertility preservation. While most participants said that they were aware of the ASCO guidelines, many reported that there was "a general lack of familiarity with fertility preservation among clinicians."

One medical oncologist (clinician #6 in the study) commented that oncologists were "truly poorly informed" and "remarkably ignorant about it."

Overall, the study participants admitted that clinicians did not have sufficient knowledge about the risks; did not understand the process of fertility preservation; did not have any sense of the timelines; had little or no understanding of the technologies that are currently available nor the cost; and did not know how or where to refer patients to consultations with a specialist.

Next, the authors looked at clinician attitudes. They note that clinicians' lack of confidence in their ability to appropriately and correctly discuss this subject with patients was partially due to a lack of preparation, and also to preconceived notions that these discussions were complex and difficult. One clinician referred to these discussions as a "a can of worms," while another described them as "a Pandora's Box."

Yet another clinician (#10 in the study) expressed concerns that the current evidence for fertility preservation is characterized by contradictions and uncertainty. For example, while there is preliminary data to suggest that hormone stimulation will not precipitate the growth rates of the cancer or increase the possibility of relapse, there are also data that suggest otherwise.

The authors also found a lack of agreement with the ASCO guidelines — and with fertility preservation in general. While all clinicians in the study agreed with the guidelines in principle, there was skepticism about fertility preservation as well as its relevance to their practices. Some saw infertility as being nonfatal and, therefore, fertility preservation was secondary to cancer treatments; others said that this type of discussion could be inappropriate among very young or older patients, or if the patient had an aggressive form of cancer and/or mortality was imminent.

The authors note that some of the clinicians' responses about fertility preservation "suggested they did not fully support or believe in its applicability to their practice."

One participant (clinician #6, a hematologist) said that infertility was not the worst possible scenario, and that it was "not like having irreversible heart disease or another tumor."

Other Barriers

The study also identified other barriers that were not related to the clinicians themselves.

For instance, environmental issues such as the organization of care, lack of time/resources, and structural support were viewed as challenges to fertility preservation and discussions.

Participants said that when there was uncertainty about diagnosis and treatment, it was difficult to advise patients. For example, if they learned late in the diagnosis-treatment continuum that chemotherapy was needed and that the cancer was aggressive, there might not be time for fertility preservation. In these cases, the clinicians said that they might not introduce the topic. Also, if a treatment plan was already in place, it would be very difficult to stop the process and introduce fertility issues.

For patient-related factors, clinician perceptions about a patient's general status also informed fertility discussions. Clinician 4 was concerned that patients were "already very stressed [and] were getting a lot of information at a time when they're already overwhelmed with this [cancer] diagnosis."

Affordability was also voiced as a concern. One clinician commented that "the costs are a game-changer for many women," while another noted that "many patients, such as students and new immigrants, are still unable to afford it."

Perceptions about socioeconomic status also appeared to influence initiation of discussions regarding fertility. "Some of these people feel that there's no way, because she works at Tim Hortons, that she can afford this. Sometimes we'll even see [that] in the referral," commented clinician #10.

Should Be Part of the Checklist

Discussions about fertility preservation should be "part of the checklist of routine care," said Richard J. Paulson, MD, professor of obstetrics and gynecology at the University of Southern California's Keck School of Medicine in Los Angeles.

It does take time for recommendations to become standard of care, he added, but guidelines about fertility preservation have been in place for more than a decade.

"When oncologists see patients in that age group, it should be part of the checklist of routine care," he said. "It's obviously easier [to discuss options] for men, but there have been many advances for women in fertility preservation."

Paulson noted that oncologists really need to refer their patients, since it is difficult to try to keep up with more than one field. "They need find and refer patients to a specialist," he said. "The challenge is getting fertility preservation to become part of the cancer treatment culture."

One of the problems is that there isn't very good data on patients with cancer concerning successful outcomes, Paulson explained. "We don't have a reporting registry for cancer patients that keeps track of IVF cycles or if they've come back to claim frozen eggs."

A patient may freeze her eggs now, and then it may be years before they are used, if at all. "It's going to take a while to get that data, and cancer specialists like hard data and are used to having it, and we don't have that yet," he said. "That doesn't exist in our field yet."

He agreed that one issue is cost, and noted that insurance often doesn't cover fertility preservation interventions. "Inroads are being made, though," he said. "In California, for instance, a law was just passed that insurance has to cover fertility preservation for cancer patients."

Overall, more work needs to be done to improve and expand pretreatment fertility preservation counseling and referral, Paulson added. "We are doing our best to educate students, residents, and cancer specialists, but the fertility field moves quickly, and it's hard to keep everyone apprised."

This research was funded by the Canadian Cancer Society. Coauthor Christine Brezden-Masley reported receiving grants and personal fees from Eli Lilly, Novartis, and Taiho; personal fees from Celgene; and grants, personal fees, and nonfinancial support from Amgen, Pfizer, and Hoffmann-La Roche outside the submitted work. No other disclosures were reported.

JAMA Network Open. Published online November 6, 2019. Full text

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