Qualitative findings

Participating oncologists (Table 1; N = 12) were 66.7% female, 41.7% of White or Asian race (each), and reported a mean time in practice of 14.3 years (SD=6.7; range: 8–29). Oncologists included one breast medical oncologist, two genitourinary medical oncologists, two gynecologic oncologists, three sarcoma and melanoma medical oncologists, one urologic oncologist, one solid tumor/cutaneous oncology medical oncologist, one neurooncologist, and one gastrointestinal medical oncologist (participating oncologists are referred to as “medical oncologist” for all specialties, with the exception of gynecologic oncologists who are referred to as such in an effort to preserve anonymity but relevantly distinguish between specialties and findings). Prior to the qualitative interview, all oncologists endorsed discussing fertility with their AYA patients via self-report survey, and were, on average, “somewhat” to “fairly” confident discussing fertility (mean=2.9, SD = 0.9; range: 1–4, where 4 is most confident). In total, 50% of the participating oncologists reported that they were “fairly” confident discussing fertility (n=1 reported being “slightly confident,” 2 reported being “somewhat confident,” 6 reported being “fairly confident,” and 3 reported being “completely confident”). The patient population seen by participating oncologists is reported elsewhere; oncologists reported that AYAs comprise 15 to 40% of their practice [32].

Table 1 Qualitative sample characteristics among oncologists

All medical oncologists, except gynecologic oncologists, reported that they had no formal training concerning fertility discussions, nor did other members of their multidisciplinary care teams (Supplemental Table 1). Gynecologic oncologists were the only providers that indicated some training discussing oncofertility. One gynecologic oncologist reported, “Just the physicians [have training], like me and my partners if they were covering for me, but not any of the other nurses or mid-level providers.” By contrast, one medical oncologist mentioned,

“I don’t know that anybody truly has training. It’s just me and her [nurse practitioner]. I don’t know that she’s done any extra training for it in her studies. As far as my studies go, there’s not something that’s taught to us in med school as far as chemotherapy infertility other than to say that it causes infertility. So, I don’t know there’s any special courses that at least I haven’t gone through.” (Medical oncologist)

Several expressed that their training was informal and consisted of gaining experience over time or by collaboration and crowdsourcing with mentors or colleagues. One medical oncologist mentioned,

“Just by experience and having conversations with other practitioners. I always get tips, or someone says ‘Oh, I found this great resource.’ So just discussions with other people, collaborations with other specialties.” (Medical oncologist)

Another medical oncologist added,

“Training? Gosh. I don’t think anybody’s had any training. Specific training for reproductive health or fertility, we just learn as we go.” (Medical oncologist)

Lectures or rotations on oncofertility during training were rarely reported. Some mentioned that their medical education emphasized the pharmacologic effects of cancer therapies but did not include fertility discussions. One stated,

“(Laughs) That’s a good question... I certainly don’t have any certifications or licenses specific to it. I do have training regarding side effects and potential side effects related to treatments. So, in that regard, I would say that I have some, but I think if it’s anything more specialized than that, no we don’t have anybody, not directly on my team at least.” (Medical oncologist)

Lack of oncofertility training among oncologists did not appear to be offset within their team, as only one oncologist reported that only social workers had formal training in discussing fertility with patients:

“I don’t think any of us have formal training. I guess in my fellowship training we certainly had lectures and such, but I don’t think…. Do you mean our nurses and our PAs? I don’t think they get any formal training. Though, of course, the social workers do and we used to work closely with our AYA social worker who left [institution] a few months ago. I think they just hired a replacement, so I’m sure we’ll be working closely with [them]. I’m sure they have formal training there.” (Medical oncologist)

Many oncologists reported that they were not aware of specific guidelines for fertility discussion and/or had not used them (Supplemental Table 2). When asked about guidelines for discussing fertility, one oncologist reported:

“I don’t know. [Laughs] Maybe you could tell me. I’m not aware of any guidelines on fertility discussions. Maybe it’s more prevalent in the GYN oncology world but for medical oncology I’m not aware of guidelines for fertility discussion.” (Medical oncologist)

Notably, one provider mentioned that NCCN guidelines inform their discussions of fertility, but later reported that they were not familiar with these guidelines beyond needing to mention fertility:

“Not anything above what I’ve mentioned. Things that are major announcements at meetings, or articles that come out that get a lot of press. NCCN guidelines are always useful…I’m not sure of the guidelines that are specifically in place, other than that it’s a good thing to mention and to offer counseling on it. I’m sure there are guidelines, but I’m not familiar with them.” (Medical oncologist)

When asked about what external clinical practice guidelines exist for fertility discussions, oncologists identified the following guidelines: NCCN, ASCO, American Urological Association (AUA) Testicular Cancer Guidelines, American Society of Hematology (ASH), European Society of Medical Oncology (ESMO), Society for Immunotherapy of Cancer (SITC), Society of Gynecologic Oncology (SGO), and the American Congress of Obstetricians and Gynecologists (ACOG; see Supplemental Table 2). A few oncologists who reported that they were not aware of guidelines for discussing fertility were able to speculate that large, well-known oncology clinical practice organizations must have developed them. For example, one stated, “I think that there are some NCCN guidelines related to this, but I’m not 100% sure” (Medical oncologist). Another added,

“I’m sure there is stuff that ASCO has. I’m sure there are things that NCCN has…Honestly, I have never read them. So, I am going to be totally honest. I assume they exist, but I have never seen them.” (Gynecologic oncologist)

Some oncologists explicitly reported that their limited knowledge of oncofertility hindered their fertility discussions. For example, one oncologist stated, “I don’t know specifics in terms of cost, so I can’t be the one to do it,” implying that they are unable to counsel patients on the cost of fertility preservation (Medical oncologist). Another echoed this, stating,

“I don’t know the data all that well either, so I give them a rough estimate, but I think that when I’ve searched in the past, the studies that I’ve seen aren’t really specific to any chemotherapy drugs, so sometimes patients will say, ‘What percentage do I have of getting pregnant after if I do chemotherapy?’ And I haven’t really seen excellent, clear, randomized trials obviously, or really great retrospective studies. So, I give them my estimate with the limitation that I think there’s not great data to support it, but to understand with the assumption that it’s less than before.” (Medical oncologist)

Oncologists’ perceptions of fertility discussion guidelines were largely positive, though some reservations were expressed. However, limited knowledge of guidelines hindered oncologists’ ability to describe how actionable they perceived components of guidelines to be (Table 2). All oncologists positively described guidelines as helpful, either because they are a good resource, useful for care recommendations, as a reference, template, or reminder, or for establishing a minimum standard of care and consistency across providers. Several described oncofertility guidelines as “necessary” and some as “adequate” for purposes of guiding discussions. One oncologist added that guidelines are helpful but it is important to have personal experience discussing fertility. They elaborated,

“I think they’re helpful from the informational standpoint. I think though, medicine is an art and so, guidelines are guidelines. They’re helpful at dispensing information, but I think you really have to have practice in delivering this. In medicine we say watch one, do one, teach one, and so, I think absorbing somebody deliver the news, empathizing with the patient, I think those are very, very helpful for observers who are just starting their practice on infertility counseling. Eventually they develop their own style and art, if you will.” (Medical oncologist)

Table 2 Oncologists’ perceptions of guidelines for fertility discussion

Another oncologist added that guidelines can be helpful for obtaining insurance authorization, stating that they can be used to “justify cost reimbursement or provide authorization” (Medical oncologist). Some oncologists emphasized that oncofertility guidelines are particularly helpful for providers who are unfamiliar with the AYA population or with reproductive health. One mentioned,

“I think if you are uncomfortable with them [fertility discussions] or if you’re unsure what to do, if there’s chemotherapies that may be overly protective, or if you have to think about things differently than you normally would, then I think that they would be helpful for that reason.” (Gynecologic oncologist)

Oncologists described ways in which oncofertility guidelines may hinder care, reporting that guidelines that are too rigid may impact care and may not capture varying and unique patient situations. Some also mentioned that guidelines that are outdated or that do not capture ongoing developments may hinder care. One stated,

“I think that a lot of the guidelines that some of these societies provide were maybe developed decades ago and as oncology is a field that’s becoming increasingly more specific and personalized, individualized, I think some of these guidelines are actually becoming quite outdated at an even faster pace. So yeah, I think that some of them definitely need to be more modernized. So, for example, if I’m only adding guidelines based on patients developing infertility related to chemotherapy but I’m only using immunotherapy, then those guidelines, how much are they helping me?” (Medical oncologist)

Fertility discussions were primarily described as informed by patient-level factors and existing research/literature, but seldom by provider experience or training (Table 3). All oncologists who were aware of guidelines reported that they referred to them for their discussions. When asked what informs their fertility discussions, nearly all oncologists reported that patient-specific factors inform their counseling. These included the patient’s treatment plan, relationship status, family building goals, sex, age, readiness to discuss fertility, desired knowledge, medical history, socioeconomic status and background, and genetic syndrome status. One oncologist added,

“Even some of our really young [patients] are really not thinking of having kids right now, but trying to remind them that, ‘Yeah, maybe that’s not your mindset right now, but think 10 years in the future. If you’re interested in having that option, then I would recommend sperm banking and going from there.’” (Medical oncologist)

Table 3 What informs fertility discussions from the perspectives of oncologists

All oncologists who reported awareness of oncofertility guidelines reported that they informed their fertility discussions. Their use ranged from referring to guidelines “occasionally, but not often [referencing guidelines in discussions]” (Medical oncologist) to “we routinely use those [guidelines] to guide us” (Medical oncologist).

Scientific literature was reported by several oncologists as informing their fertility discussions with patients. One stated,

“If I’m planning on having the discussion with each patient and then somebody demonstrates interest, I go back and again do a bit of a literature review. From a fertility standpoint for chemotherapy, you usually have to do an updated literature review.” (Medical oncologist)

Only two oncologists stated that their experience and/or training informs their fertility discussions, highlighting the limited formal training surrounding impacts to fertility after cancer treatment received by providers. One added,

“I suppose it would be the training that I had from my mentors when I was a fellow. I always admired the way that they were able to be honest and up-front with patients, but not to scare them, or give them more anxiety than they already could have. That’s in terms of discussing risk, and then, in terms of a plan moving forward, I always like to have those going hand-in-hand, I think talking with our AYA group here, and getting a better understanding of what resources there are available for patients has been very informative.” (Medical oncologist)

Quantitative findings

AYAs (N = 58) were, on average, 32.0 years at diagnosis (SD = 5.3; range 19–39), female (53.5%), Hispanic (35.1%), White (58.9%), college graduates (34.5%), with an annual household income of $80,000+ (57.2%; Table 4). All were insured, either privately (86.2%) or publicly (13.8%). AYAs were diagnosed with stages I (22.4%) and II (25.9%) diseases; 31.0% reported not knowing or being unsure of their disease stage (this may be because staging was collected at time of recruitment and patients could still be in the early phase of receiving diagnostic information). AYAs were treated with surgery (53.5%), chemotherapy (41.4%), and radiation (25.9). On average, AYAs received 1.6 (SD=1.2) treatment modalities. Over half (58.1%) reported normal menstruation and one quarter (25.9%) reported a live birth prior to their cancer diagnosis. Premature menopause and surgery to remove one or both ovaries were reported by 22.6% and 16.1% of females, respectively. Low sperm count and surgery to remove one or both testicles were reported by 3.7% and 44.4% of males, respectively.

Table 4 Quantitative sample characteristics among AYAs (N = 58)

Overall, 82.6% (N = 33) of AYAs reported being informed of the impact of cancer treatment on their fertility, with 66.7% reporting that these discussions occurred at “some visits” (Table 5). AYAs who discussed fertility reported being very (39.4%) or moderately (27.3%) satisfied with their discussion. Most (63.6%) AYAs discussed fertility with their oncologist, and few discussed it with a physician assistant or nurse practitioner (12.1%), gynecologist (6.1%), or social worker (3.0%).

Table 5 Fertility discussion

AYAs who reported a fertility discussion reported “rarely” or “never” discussing the following components with their provider: (1) a history of cancer, cancer treatment, or fertility treatment does not increase the risk of cancer or birth defects in your child, except in special circumstances (69.7%); (2) provided with information to patient advocacy resources (for example, FertileHope, Livestrong, the Susan G. Komen® Breast Cancer Foundation, and the Colon Club; 66.7%); (3) offered a referral to supportive counseling prior to treatment with adequate time to use these resources (63.6%); (4) there is no increased risk of cancer returning because of preserving fertility and pregnancy (60.6%); (5) if you are female, timing of fertility treatments based on your menstrual cycle (period; 40.0%); (6) individual factors such as disease, age, treatment type and dosages, and pre-treatment fertility (33.3%); and (7) considering your options as soon as possible to increase the likelihood of success (33.3%, Table 6).

Table 6 Components of fertility counseling among AYAs who reported a discussion (N = 33)