Intervention Opportunities to Increase the Delivery of Guideline-Concordant Fertility Discussions for Adolescents and Young Adults With Cancer

Abstract

Introduction

Clinical practice organizations have developed evidence-based guidelines to structure oncofertility care delivery and mitigate fertility impairment after cancer. However, fertility care remains a leading unmet need for adolescents and young adults (AYAs) with cancer, and implementation of guidelines in practice is poorly understood. This study aims to identify intervention opportunities to improve the delivery of guideline-concordant oncofertility counseling for AYAs with cancer from the perspectives of oncologists.

Methods

Oncologists who treat AYAs with cancer at risk for infertility at an NCI-designated Comprehensive Cancer Center in California were recruited to participate in a virtual, semi-structured qualitative interview. Opportunities for interventions were identified following a thematic analysis.

Results

Data/thematic saturation was achieved through 12 interviews with oncologists (66.7% female, 41.7% White and 41.7% Asian, in practice for an average of 14.3 years). To increase delivery of guideline-concordant oncofertility counseling for AYAs with cancer, oncologists reported opportunities for: (1) enhancements to electronic care systems (e.g., reminders to discuss fertility with young patients, automatic referrals for fertility-related care, expedited oncofertility consults); (2) dedicated personnel and time (e.g., appointing a specific person to discuss fertility, allocating dedicated time to discuss fertility); and (3) oncologist education (e.g., related to financial considerations, fertility preservation, availability of oncofertility-related resources within the care setting, patient preferences and experiences).

Discussion

This study identified oncologists’ perspectives on opportunities for interventions to improve guideline-concordant oncofertility counseling for AYAs with cancer, providing actionable insights into targets for change across both provider- and system-level domains. Notably, identified interventions depend upon institutional commitments to prioritize oncofertility. Without systemic efforts to improve care, oncofertility will likely remain a prominent unmet need for AYAs with cancer.

Background

In the United States, the National Cancer Institute (NCI) estimates that 85,480 adolescents and young adults (AYAs) aged 15 to 39 years will be diagnosed with cancer in 2025, with 86% expected to survive at least five years.^1,2 However, numerous health challenges due to cancer and its treatment may impact physical and psychological health throughout survivorship, such as infertility.^3-5

To mitigate potential impairments to reproductive health, globally recognized clinical practice organizations, such as the National Comprehensive Cancer Network (NCCN) and American Society of Clinical Oncology (ASCO), have generated evidence-based, clinical practice guidelines to structure the delivery of quality oncofertility care.^6-12 Guidelines include specific actionable recommendations, including counseling patients on infertility risk, providing a referral to a fertility specialist, discussing fertility preservation options and associated costs, and describing potential pregnancy risks to allow AYAs to family plan.^6-10 However, guidelines on their own are insufficient, as many AYAs report moderate to high reproductive concerns, indicating that that they may not be provided sufficient counseling and information regarding their reproductive futures. ¹³

Our prior research has explored the content of fertility discussions between oncologists and their AYA patients, revealing that discussions are largely unstandardized and components of ASCO guidelines are seldom integrated in ongoing counseling.^14,15 Another study identified reasons why clinicians did not adhere to ASCO guidelines, finding that many clinicians were unfamiliar with infertility risks and perceive fertility preservation to be difficult and complex as barriers. ¹⁶ Most clinicians reported awareness of ASCO guidelines, but shared that they feel “truly poorly informed” and “remarkably ignorant about it.” ¹⁶ Clinicians also reported lacking knowledge surrounding fertility preservation, uncertainty regarding fertility preservation timelines, and had limited understanding of available technologies or costs. ¹⁶ Despite evidence that oncologists often have limited knowledge of and only moderate adherence to clinical guidelines, effective strategies to support guideline adherence and comprehensive oncofertility counseling have not been identified.

The purpose of this study is to identify intervention opportunities to improve the delivery of guideline-concordant oncofertility counseling for AYAs with cancer. We explored the perspectives of oncologists who play a central role in these discussions. Findings have potential to guide the design of targeted strategies to bridge the persistent gap between evidence-based oncofertility guidelines and their routine implementation in clinical practice. By identifying opportunities for intervention to support oncologists’ adherence to guidelines, this study seeks to advance the delivery of equitable, high-quality reproductive care for AYAs and bridge the disconnect between oncofertility guidelines and practice.

Methods

This study followed the Declaration of Helsinki guidelines and was approved by the University of Southern California (USC) Institutional Review Board (IRB; UP-22-00847). Methodology is reported in Supplemental Table 1 in adherence with the consolidated criteria for reporting qualitative research (COREQ) 32-item checklist and elsewhere.^14,15,17

Recruitment

Oncologists employed at an adult-focused NCI-designated Comprehensive Cancer Center based in California who treat AYAs (defined as patients diagnosed with cancer <40 years) at risk for treatment-related infertility were recruited to complete a virtual, semi-structured qualitative interview between April to November 2023. We recruited oncologists as they are the primary treating physicians, one of the preferred sources for learning about late effects of cancer treatment among AYAs, and often initiate oncofertility counseling with patients.^18-20 We used convenience and opportunistic sampling to identify eligible oncologists.^21-23

Oncologists were contacted via email by the PI (JS) with a description of the study and a request to schedule a qualitative interview. Those who did not respond were sent a follow-up email. Prior to the interviews, oncologists received an information sheet and verbally agreed to study participation and interview recording. After the interviews, oncologists received a $25 gift card as a token of appreciation and a resource sheet with information regarding oncofertility resources. All study activities were conducted in English. In total, we contacted 27 adult-focused oncologists and 12 participated, for a recruitment rate of 44.4%.

Data Collection

The data collection team included the PI who led interviews (JS) and two research assistants, one of whom was present for each interview (CIR, SYY). Oncologists were asked to complete a brief HIPAA-compliant REDCap survey prior to the interview. Collected demographic information included oncologist’s sex, race, ethnicity, specialty, and years of experience. Fertility-related information included whether they discuss fertility with their AYA patients (yes, no, not sure) and their level of confidence in doing so. Responses for confidence level used a 4-point Likert scale and ranged from 1 “slightly” to 4 “completely” confident.

A semi-structured interview guide was designed to elicit oncologists’ experiences discussing fertility with their AYA patients. Sample interview questions included, “What helps you have discussions that include the components of guidelines?”, “What do you need to implement these guidelines in your discussions?”, “What would make you more likely to refer patients to fertility specialists on a regular basis?”, and “What would make you more likely to include components of guidelines in your discussions?”. The complete interview guide was previously published. ¹⁴ Interviews were conducted via HIPAA-compliant Zoom. All research materials were stored on a secure server in accordance with HIPAA guidelines. The demographic survey took approximately 5 minutes, and the qualitative interview took under 60 minutes to complete.

Data Analysis

After data were collected, de-identified audio files were sent to an external transcription service for verbatim transcription. Recordings were deleted immediately after transcription. Our analyses followed the Braun and Clarke (2006) six-phase method for establishing trustworthiness during thematic analysis. ²⁴ We reviewed transcripts for patterns and conducted an inductive codebook thematic analysis. Disagreements in coding were resolved via group discussion. We reached data/thematic saturation through 12 interviews. This sample size is evidence-based for reaching data saturation among a homogenous sample.^22,23

To preserve anonymity but relevantly distinguish between specialties, participants are identified in text as medical oncologists or gynecologic oncologists. Themes are presented in text as distinct intervention opportunities.

Results

Participating oncologists (N=12; 66.7% female, 41.7% White and 41.7% Asian, in practice for an average of 14.3 years) comprised several cancer specialties including breast, genitourinary, sarcoma, gastrointestinal, urologic, melanoma, and neuro-oncology (Supplemental Table 2). All reported discussing fertility with their AYA patients and 50% were fairly confident doing so. A summary of findings is described in Table 1. Additional findings, including the patient population seen by participating oncologists, the content of fertility discussions, and oncologists’ training, awareness, and perceptions of guidelines are reported elsewhere.^14,15

Table 1.

Summary of Findings

Theme (Intervention)	Sub-theme (Sub-intervention)	Sample quote
Integrated system of care leveraging enhancements to the electronic medical record (EMR) to facilitate guideline-concordant fertility discussions for AYAs	EMR reminders to discuss fertility with young patients	“If we had a patient that was deemed AYA, then if the EMR had some kind of reminder, your patient may be AYA, did you discuss fertility, I think people may adhere to guidelines more, and then that kind of prompted the guideline as a reminder, I think that would improve adherence in discussions.” (Medical Oncologist)
	Automatic patient referrals for fertility-related care	“If someone, just as they’re scheduled to see an oncologist for the first time, if they’re under 40, they automatically are offered a visit to discuss fertility, oncofertility. So same way they would get a genetics appointment. If there was a reflex to offer that kind of a visit with a designated person who has specific information as a part of standard of care, that would be amazing.” (Medical Oncologist)
	Expedited consults in the context of cancer to allow patients to obtain oncofertility care within the confines of time-sensitive initiation of cancer treatment	“It’s hard to get patients in for visits and when you’re dealing with a patient population who needs to start treatment for their cancer, you can’t wait three weeks for an appointment to discuss something that will take another three weeks when you really need to be starting chemo yesterday. So, I think if there was a way to expedite patients who are being seen for fertility within the context of starting treatment for their cancer that would facilitate a much faster timeline, that would be ideal.” (Medical Oncologist)
Designated oncofertility resources to facilitate guideline-concordant fertility discussions	Appointing an explicit person to discuss fertility	“I guess there are no systems. So, I think making some sort of formal system within [redacted care setting] would be really good. I think implementing someone maybe specifically or social work or someone to talk to new patients starting treatment or younger patients or whatever the cutoff is would be really helpful.” (Medical Oncologist)
	Allocating dedicated time to discuss fertility	“I think the biggest one is time. We’re cranking it out and having 60 minutes to talk to a patient is a luxury. That’s a long time, and oftentimes you’re taken away from other patients. So I would say time and scheduling and the volume of the patients that you have to see in a given day, so sort of the bureaucratic expectations that you see a certain number of patients per clinic definitely is an inhibitor of a useful discussion or a meaningful discussion about fertility with our patients, and that’s why I have to hand it off to the AYA group, because I know what I just said that brought them to tears is not enough.” (Medical Oncologist)
More education in order to deliver guideline-concordant oncofertility care	Financial considerations of oncofertility	“Of course, financially, what’s the burden on the patient? Because a lot of the times, that’s definitely a consideration is if they can afford it or not.” (Medical Oncologist)
	Fertility preservation	“I would like to know more about fertility preservation and some of the other options out there, and realistic options, too, because I think a lot of these options are off-limits for our patients.” (Medical Oncologist)
	Availability of resources within the care setting	“I think whether it’s a division meeting with all the oncologists to say, hey, these are resources and these are your avenues, so you should pursue them. Because I don’t think a lot of us are aware of what other options we have other than social work.” (Medical Oncologist)
	Patient preferences and experiences	“I’d like to know if there is data about patient preferences, do they want to hear about this at the beginning, have there been any questionnaire surveys about this, do they want to hear about it from us or they prefer to hear about it from a navigator or social worker, do they want to know?” (Medical Oncologist)

AYA=adolescent and young adult; EMR=electronic medical record.

Intervention 1: Enhancements to Electronic Care Systems

Oncologists described opportunities for an integrated system of care leveraging enhancements to the electronic medical record (EMR) to facilitate guideline-concordant fertility discussions for AYAs (Table 2). Potential interventions included: (1) EMR reminders to discuss fertility with young patients, (2) automatic patient referrals for fertility-related care, and (3) expedited consults in the context of newly diagnosed cancer.

Table 2.

Integrated System of Care Leveraging Enhancements to the EMR to Facilitate Guideline-Concordant Fertility Discussions for AYAs

Sub-theme (Sub-intervention)	Quote	Oncologist
EMR reminders to discuss fertility with young patients	“If we had a patient that was deemed AYA, then if the EMR had some kind of reminder, your patient may be AYA, did you discuss fertility, I think people may adhere to guidelines more, and then that kind of prompted the guideline as a reminder, I think that would improve adherence in discussions.”	Medical Oncologists
	“I think the best would be that EMR reminder that includes the guideline there, would be best.”
	“I like to think that I’m on top of it and I think about these issues with every patient, but maybe it’d be nice to have some sort of flag or reminder to address it, you know, like on women under the age of 50 should have this discussion, even going beyond the age limits that you’ve outlined, because most women even beyond the age of 50 could still get pregnant so that discussion needs to be had with any childbearing person. Men can go on forever, so maybe that reminder should be there with all men. I don’t have a fertility discussion with all men. If they seem like they’re still in the childbearing age, I would talk to them, generally 40 and below.”
	“You write a chemo, maybe there’s a flag that goes up that says, hey, patient is 35, did you have the [fertility] discussion?”
	“Reminder systems would be good.”
	“I think probably that EMR reminder [would make them more likely to refer to REI].”
	“Having some reminder where if your patient meets criteria as being AYA, one, it could self-cause a consult to AYA, do you want to refer the patient to AYA as sort of an opt-out, and then two, do you want to refer to AYA, do you want to refer them to genetics, for example, and have you discussed oncofertility.”
	“I just kind of have to remember to do that. There is no list that I have, there are no checklists. But I think it’s something that you kind of have to remember to do.”	Gynecologic Oncologist
Automatic patient referrals for fertility-related care	“If someone, just as they’re scheduled to see an oncologist for the first time, if they’re under 40, they automatically are offered a visit to discuss fertility, oncofertility. So same way they would get a genetics appointment. If there was a reflex to offer that kind of a visit with a designated person who has specific information as a part of standard of care, that would be amazing.”	Medical Oncologists
	“If there was a reflex to offer that kind of a visit with a designated person who has specific information, as a part of standard of care, that would be amazing, and that would take care of so many of the issues that come up for us.”
	“I think things can definitely be improved or streamlined, and maybe getting social work [involved] initially with younger patients, just for all new patients. I think that is something that would be really helpful.”
	“The lack of a clear streamlined process [is a barrier to referral], no real referring system, as far as I’m aware of, of who to go to.”
	“Ideally, there are a lot of things that would be great to integrate into our AYA patients’ cancer care, whether it’s having a more formalized assessment of fertility and a more formalized way of referring patients… I think a lot gets put on the patient, which I guess makes sense, to some degree, but some of them, they are very young, and they can get kind of lost and overwhelmed by everything going on. So, it would be nice if we had a way to directly refer, rather than give them a phone number, which is what we do essentially, give them a phone number to California Cryobanking, and they have to call over.”
	“One thing that would be nice is if AYA is coming in, then we have the auto-consult social work, like it’s more of [on] the clinic. When they know that there’s an AYA coming in, they contact the AYA social worker or, if they’re not available, a regular social worker in advance with every AYA patient. I think that’s important.”
	“It would be nice to like have [an oncofertility referral] as an order that we can directly refer them or… I think it’s hard because unless they go to [redacted Comprehensive Cancer Center as opposed to affiliated safety-net care setting], I guess we might be able to do a direct referral to [redacted fertility specialists affiliated with Comprehensive Cancer Center]… I don’t even know how that works. Usually, I think the patients call or the social workers help them call. I don’t know. I just wish there was better follow up there.”
	“Having kind of a streamlined process in place so that patients are seen by all the relevant team members in a timely fashion. I think that would be ideal.”
	“It would be nice that automatically if there is an AYA patient that a brief consultation is arranged with a fertility specialist to make sure that, even if there’s some redundancy between my discussion and their discussion, that that need is being addressed and met and all questions are answered. So, to have that already in place, so it’s not a separate referral. I mean this is completely different but it’s like patients that have certain diagnoses, where we know the prognosis is guarded, having a protocol in place where they’re automatically integrated into the palliative care team within a certain timeframe, that’s important for outcomes, and if we have something like that in place where okay if this patient has a new consultation arranged with this provider, this oncologist, then okay they’re an AYA patient, we’re going to automatically set them up with a fertility specialist team, and that team can have different providers and nurses and they have it in place as a default, then maybe if it’s not relevant, if they’ve already been evaluated or whatnot, then you could always move it or cancel it, but to just have that we ensure that everybody has that discussion and has access to those resources.”
	“I think it should just be a standard thing that if somebody’s within a specific age range, that should be brought up very quickly, and similar to other things in cancer care, sometimes these discussions happen too late. So, for example, an advanced directive should be something a patient is informed about earlier in the process, and similar with fertility. I think earlier discussions would be better.”
	“I think that when a younger patient comes in, at least at a cancer center, we should probably be better about screening them earlier. It doesn’t even have to be the MD necessarily asking, but it should probably be addressed pretty early on just to make sure that that’s covered.”
	“If there was a more streamlined way to refer to REI, and to get other resources, like health groups and things like that, would be useful for our patients.”	Gynecologic Oncologist
Expedited consults in the context of cancer to allow patients to obtain oncofertility care within the confines of time-sensitive initiation of cancer treatment	“It’s hard to get patients in for visits and when you’re dealing with a patient population who needs to start treatment for their cancer, you can’t wait three weeks for an appointment to discuss something that will take another three weeks when you really need to be starting chemo yesterday. So, I think if there was a way to expedite patients who are being seen for fertility within the context of starting treatment for their cancer that would facilitate a much faster timeline, that would be ideal.”	Medical Oncologists
	“If we had that e-consult, if we had the opportunity to do that, to specifically have a consultation for fertility in the context of cancer and I could do that knowing all of this would be expedited, and that the communication would be open with me as the treating oncologist, then I mean I think that would make things tremendously easier and better. Right now, it’s all homegrown. I just have to consult [gynecology] or [obstetrics], and just hope that they are able to understand that this is a patient with cancer who needs treatment soon, and if they don’t happen to see that, then it gets lost. If there were a special order or a special referral that said fertility in the context of urgent need for cancer therapy, and that that held some sort of weight to expedite things, that would be much better.”
	“It would be great if there were a person in REI who we could have on speed dial for when we’re in clinic. If there was a nurse, or even a patient navigator within REI. Where, if we had a patient who needed a referral and who was interested in at least discussing options, whether financially feasible or not, it would be great if we knew who that person was, and we could have that on hand. That would be helpful.”
	“We usually don’t have enough time for referrals and things like that to allow for a patient to make a more informed decision.”
	“First of all, getting them into see the fertility specialist, number one. So that’s at least a week. Getting approval for therapy, that’s at least another week or two, and then actually harvesting the eggs, for example, that’s at least a week or two. So, we’re talking like four weeks down the road now, and that’s generally unacceptable.”
	“It would be really nice to get fertility folks to come in on the ground and actually see what this looks like and understand that we can’t wait that long. So, if they can just get on the ground with us, instead of quoting prices and options, that would be really nice to have that support.”
	“It comes down to urgency and how quickly we can get patients referred to get evaluated. I think that’s always the barrier, it’s hard to get in.”
	“I think the system-level barriers would be the ability to get in to somebody timely. So far, I’ve been fortunate, there’s only two doctors I refer to for fertility and they’re always able to get them in quickly, but if they were on vacation or doing something and not in town, that would probably be the biggest barrier is finding someone to see them quickly.”
	“There are a couple [fertility specialists] I work with who understand the timeliness that we need, so they usually give our patients preference in getting them in. Infertility doctors can usually see our patients within the week, the next week, and get them in for consultation, such that that process hopefully only takes about one to two weeks, maybe three weeks at the longest, so that I can get them on a chemo within the month.”
	[When asked how this was arranged) “Arranged on my own. It’s the understanding with the doctors that I work with.”
	“In my experience, it’s very challenging to get those patients in [to see a fertility specialist], and by the time I get them in, the conversation is irrelevant. I think six months to a year or something like that, and I think it’s institution to institution, but I haven’t really had, in this institution, I know this is being recorded, I’m sorry, but I haven’t really had good success in getting them in, I haven’t had very positive feedback from patients. So, I haven’t [been referring] for that reason, but I think it’s just because of the logistics and the burden of clinic and I don’t know, that’s anecdotally, I haven’t found it to be beneficial.”

AYA=adolescent and young adult; EMR=electronic medical record; MD=medical doctor; REI=reproductive endocrinology and infertility.

EMR Reminders to Discuss Fertility

Oncologists shared that automatic reminders from the EMR to discuss fertility with young patients would facilitate guideline-concordant fertility discussions. Some also recommended that these reminders may include the guidelines. For example, a medical oncologist stated, “You write a chemo, maybe there’s a flag that goes up that says, ‘Hey, patient’s 35, did you have the discussion?’” Similarly, another medical oncologist stated,

“If we had a patient that was deemed AYA, then if the EMR had some kind of reminder, your patient may be AYA, did you discuss fertility, I think people may adhere to guidelines more, and then that kind of prompted the guideline as a reminder, I think that would maybe improve adherence in discussions.”

Automatic Patient Referrals for Fertility-Related Care

Oncologists reported a desire for automatic referrals for young patients to discuss fertility or to a fertility specialist. Several wanted a more “streamlined” way to refer patients, reporting a lack of a formalized process for referral and difficulty directly referring patients to obtain care. A medical oncologist emphasized,

“It would be nice that automatically if there is an AYA patient that a brief consultation is arranged with a fertility specialist to make sure that, even if there’s some redundancy between my discussion and their discussion, that that need is being addressed and met and all questions are answered.”

They added that this could ensure that everyone has a fertility discussion and has access to resources. Another medical oncologist elaborated,

“If someone, just as they’re scheduled to see an oncologist for the first time, if they’re under 40, they automatically are offered a visit to discuss fertility, oncofertility. So same way they would get a genetics appointment. If there was a reflex to offer that kind of a visit with a designated person who has specific information, as a part of standard of care, that would be amazing.”

Expedited Consults

Delays obtaining needed reproductive healthcare were reported as a barrier to delivering guideline-concordant oncofertility care. Several oncologists expressed difficulty waiting for oncofertility care when patients need to begin cancer treatment and stated that this waiting period causes patients to be unable to obtain desired fertility care. One medical oncologist elaborated,

“Right now, it’s all homegrown. I just have to consult [gynecology] or [obstetrics] and just hope that they are able to understand that this is a patient with cancer who needs treatment soon, and if they don't happen to see that, then it gets lost.”

Several oncologists shared a need for expedited referrals that allowed patients to obtain desired oncofertility care within this time-sensitive window. A medical oncologist stated,

“It’s hard to get patients in for visits and when you’re dealing with a patient population who needs to start treatment for their cancer, you can’t wait three weeks for an appointment to discuss something that will take another three weeks when you really need to be starting chemo yesterday. So, I think if there was a way to expedite patients who are being seen for fertility within the context of starting treatment for their cancer that would facilitate a much faster timeline, that would be ideal.”

Another medical oncologist added,

“There are a couple [fertility specialists] I work with who understand the timeliness that we need, so they usually give our patients preference in getting them in. Infertility docs can usually see our patients within the week, the next week, and get them in for consultation, such that that process hopefully only takes about one to two weeks, maybe three weeks at the longest, so that I can get them on a chemo within the month.”

When asked how expedited oncofertility care was arranged, this oncologist further elaborated,

“Arranged on my own. It’s the understanding with the docs that I work with and so it’s a courtesy they extend in getting our patients in quickly and getting them treated quickly. In fact, it’s a courtesy they extended to me that I didn’t even have to say anything from day one. I’ve been in practice now 17, 18 years, and from the get-go they always put our oncology, at least my oncology patients in the expedited line and they get them in pretty quickly.”

Intervention 2: Dedicated Personnel and Time

Oncologists reported opportunities for designated oncofertility resources to facilitate guideline-concordant fertility discussions (Table 3). These resources encompassed two specific areas: (1) appointing a specific person to discuss fertility and (2) allocating dedicated time to discuss fertility.

Table 3.

Designated Oncofertility Resources to Facilitate Guideline-Concordant Fertility Discussions

Sub-theme (Sub-intervention)	Quote	Oncologist
Appointing an explicit person to discuss fertility	“I guess there are no systems. So, I think making some sort of formal system within [care setting] would be really good. I think implementing someone maybe specifically or social work or someone to talk to new patients starting treatment or younger patients or whatever the cutoff is would be really helpful.”	Medical Oncologists
	“Where I trained at [redacted], and at [redacted], we actually had a person that we could call who worked with REI, and if there was a young patient interested in any sort of fertility planning, we basically could call that person and that person, knew all the resources and knew all of the tests that needed to be done and what the timing would be, they took care of all of it. So to have a designated person like that, which I’ve been in practices where that’s possible, facilitates this process in a much more productive way.”
	“A designated person to be able to schedule with, to have a discussion, because of the constraint on the physician with time.”
	“I’m not an OB-GYN, right? I’m not an REI specialist. So, I don’t know all the new things available to perhaps help, and how long they take, to preserve fertility, or like if a patient wants to freeze embryos, I don’t know how long that takes. Maybe that’s different from when I was training, right? So, if there were a way to have a person who could see that patient whether it’s an REI physician, or a patient navigator who has at least the initial information, so the patient could be informed as early as possible about how this might work into their treatment, that would be fantastic.”
	“I think that the AYA program and their AYA social worker was, is, and will be very helpful in [discussing fertility]. So, I think that would be one thing that I wish we had a more formalized path to because I think now a lot of it is on the MDs, right, and the PAs and the nurses to really remember to have these discussions, like also follow up on these discussions, because you talk about it once at your first visit with these patients, and they’re so overwhelmed because you’re telling them that they have cancer and that they need chemo and then, on top of that, ‘Oh, it’s going to decrease your chances of having children in the future.’ So, it’s a lot. It’s like 100 things running through their mind, and you do have to make sure that you follow up on these things, and having a more formalized map would be nice.”
	“I think when our AYA social worker left, she was excellent, and it was very easy. If we knew an AYA was coming in, I would send her an email a couple weeks in advance. She would come at the time of the meeting and meet with the patients. So, I think when she left, we definitely lost that, and the patients definitely miss her as well.”
	“I think specifically if we had an AYA navigator, that would be great, so at least they could help these patients get referred to the appropriate fertility experts, if that’s what’s needed.”
	“If you could have a specialist in this area that is sort of a referring system, and they just, kind of like referring to a dietitian, then they could meet with them one time, we’ve had the discussion, they actually have more familiarity with the guidelines, and they can connect, I think that would be great”
	“I think having a cancer coordinator that helps make sure that these patients are… sometimes people will just forget to ask the right questions of their doctors and they’re overwhelmed by their cancer diagnosis. So, having somebody like a navigator to look out for them and make sure that they’re asking the right questions, especially if their doctors are not even thinking about it, would be a nice thing.”	Gynecologic Oncologist
Allocating dedicated time to discuss fertility	“If there was more time to [discuss fertility], or a designated visit, designated person.”	Medical Oncologists
	“I think the only changes would be a designated time to be able to discuss it.”
	“I think the biggest one is time. We’re cranking it out and having 60 minutes to talk to a patient is a luxury. That’s a long time, and oftentimes you’re taken away from other patients. So I would say time and scheduling and the volume of the patients that you have to see in a given day, so sort of the bureaucratic expectations that you see a certain number of patients per clinic definitely is an inhibitor of a useful discussion or a meaningful discussion about fertility with our patients, and that’s why I have to hand it off to the AYA group, because I know what I just said that brought them to tears is not enough.”
	“Certainly, the amount of time you have in a visit, that’s always an issue, right? If they have all these questions about their chemo and all of this, and there’s very little time to discuss fertility, you could probably spend an entire hour’s visit, I mean more than that, but even the initial discussion could take a long time. So, I think time is always an issue [preventing a comprehensive fertility discussion].”
	“If that visit were, let’s say, visible to me as the oncologist. So, when I’m seeing the patient for the first time, I could say, oh, you saw the fertility specialist already, or, oh, you’re seeing the fertility specialist at the end of the week. Wonderful, I will discuss what I would like to do as far as your systemic therapy for your cancer, and I will either pull up what the discussion was, so I can see what the patient discussed with that person, or I would say, after you have this discussion at this designated visit, let me know if anything changes, and we can kind of adjust our timing, you know? So, there could be communication between practitioners, but if it was actually separated out as a designated visit, that would be hugely helpful for my practice.”
	“I think one of the most basic things is having adequate time to sit down and chat with the patient. For example, as I mentioned in our first consultation, we’re discussing a lot of things, like diagnosis, prognosis, treatment plan, what to expect, and potential side effects of treatments, and I’m fortunate that I can block off an hour for each new patient that I have, so that we can talk about all of these things, but I think, as practices become busier, or as there are more patients being seen, sometimes there just isn’t enough time to devote to these questions, and again, not enough time for the provider to bring them up, or not enough time for the patient to go through their whole list of questions and considerations, to bring up to the provider. So, more time would be very helpful.”
	“The timeline perhaps or prioritizing patients’ questions at the beginning, which are usually things like prognosis, the treatment, involving clinical trials. So, for new patients, we have 60 minutes and that’s a lot to go through in that time. For follow-up visits, we have 15 to 20 minutes, and in that time, we’re covering a lot of things, and so I think, like anything else, I think time and patient priorities.”
	“It’s just time and there just being so many things to discuss. You know, sometimes it just ends up being something that comes up like at a later visit, or that we sort of have to get through some treatment or some stuff first before we can really focus on that….at some point, you just have to kind of like end the visit because it’s too much time, too much information at once.”	Gynecologic Oncologist

REI=reproductive endocrinology and infertility; OB-GYN=obstetrics and gynecology; MD=medical doctor; PA=physician assistant.

Appointing a Specific Person to Discuss Fertility

Oncologists desired a person designated to discuss fertility with AYA patients. A medical oncologist stated,

“I guess there are no systems. So, I think making some sort of formal system within [place of employment] would be really good. I think implementing someone maybe specifically or social work or someone to talk to new patients starting treatment or younger patients or whatever the cutoff is would be really helpful.”

Echoing this sentiment and suggesting its feasibility, another medical oncologist added,

“Where I trained at [redacted], and at [redacted], we actually had a person that we could call who worked with [reproductive endocrinology and infertility] and if there was a young patient interested in any sort of fertility planning, we could call that person, and that person who knew all the resources and who knew all of the tests that needed to be done and what the timing would be, they took care of all of it. So to have a designated person like that, which I’ve been in practices where that’s possible, facilitates this process in a much more productive way. ”

Allocating Dedicated Time to Discuss Fertility

Oncologists expressed difficulties engaging in comprehensive fertility discussions when limited by the amount of time they can spend with each patient. Several shared that there are many things to get through during a single visit, with one gynecologic oncologist stating, “At some point you just have to end the visit because it’s too much time.” A medical oncologist added, “I think one of the most basic things is having adequate time to sit down and chat with the patient.” Similarly, another medical oncologist elaborated,

“I think the biggest one is time. We’re cranking it out and having 60 minutes to talk to a patient is a luxury. That’s a long time, and oftentimes you’re taken away from other patients. So I would say time and scheduling and the volume of the patients that you have to see in a given day, so sort of the bureaucratic expectations that you see a certain number of patients per clinic definitely is an inhibitor of a useful discussion or a meaningful discussion about fertility with our patients, and that’s why I have to hand it off to the AYA group, because I know what I just said that brought them to tears is not enough.”

Intervention 3: Oncologist Education

Oncologists indicated several opportunities for more education to improve their delivery of guideline-concordant oncofertility counseling (Table 4). These included: financial considerations of oncofertility, fertility preservation, availability of resources within the care setting, and patient preferences and experiences.

Table 4.

More Education in Order to Deliver Guideline-Concordant Oncofertility Care

Primary theme (Intervention)	Quote	Oncologist
More education	“I think probably just educating the providers as a whole. So, I think there’s always an encouragement to learn more, whether it is through just circulating guidelines, which I think is fine, or presentations.”	Medical Oncologists
	“Review of [oncofertility counseling] guidelines, not just for me, I think for all of us.”
	“I think with the APPs and maybe the nurses as well, the other ancillary folks, I think they might be very receptive to training and guideline incorporation for these patients. Because you know what happens is the physicians ignore it and it falls on them to deal with it, as you see what happens. I’m being honest here, okay? [LAUGHING]”
	“If people are tapped out... so you got to figure out a way to contingently reward the folks for reading these guidelines and taking these guidelines. So, CME credit may help. Two hours of CME credit would be helpful. I think people might look at it. I think incorporating it into a broader curriculum such as AYA, I think people would be more likely to look at it. I don’t think infertility by itself is going to be a major point of emphasis for physicians. So, you’re going to have to kind of put it within the context of a larger program and also contingent reward. So yeah, we’re all very altruistic, but I think at this point we’re doing a lot of altruistic things and one more altruistic thing can be kind of stressful. So yeah, you got to reward them in some kind of way.”
	“I think that providers can always be more educated, because certainly, part of the challenges are also uncertainty of what’s going to happen, and what it’s going to be like, and I feel like when we are armed with knowledge, or if we are able to share with patients, this is going to happen, then that, then that, then sometimes it takes away some of their anxiety about it. So certainly, provider education would be more helpful.”
	“Maybe if we had a review, you know, we have our faculty meetings every month or every two weeks. I think if it was something that was discussed, a refresher, brought up, a reminder, something like that, then I think we’d be more likely to include [guidelines].”
	“Training our staff on our AYAs [would make them more likely to integrate guidelines].”
	“I think it would be great if we had a more formal discussion and maybe had a little bit either ourselves more training on it or perhaps if there could be a program that we can refer to, to get a more streamlined approach, and a little bit more of a clearer understanding of how much fertility is truly impacted per chemotherapy. So, I think more formal training and a more streamlined process would be really great for patients, especially for some of the tumor types that involve younger patients. I think it’s important in all patients, but I think particularly in certain disease types that are more likely for younger patients, I think it’s important.”

APP=advanced practice provider; CME=continued medical education; AYA=adolescent and young adult.

AYA=adolescent and young adult.

Financial Considerations

Some oncologists wanted to know more about costs associated with fertility-related care to be able to properly counsel patients. For example, one medical oncologist stated “Of course financially, what’s the burden on the patient? Because a lot of the times, that’s definitely a consideration is if they can afford it or not.” Another medical oncologist added, “If there’s insurance coverage, ways to get coverage, charities, support groups that patients can go to to discuss this. I don’t really know of that many.”

Fertility Preservation

Several oncologists reported wanting to learn more about fertility preservation to properly counsel patients. One medical oncologist stated, “I would like to know more about fertility preservation and some of the other options out there, and realistic options, too, because I think a lot of these options are off-limits for our patients.” Similarly, another medical oncologist stated, “Even I could always learn more in terms of the details of what the fertility preservation process is actually like.”

Availability of Oncofertility-Related Resources Within the Care Setting

Some oncologists shared that more information on the resources readily available to them would be helpful. One medical oncologist stated,

“I think whether it’s a division meeting with all the oncologists to say, hey, these are resources and these are your avenues, so you should pursue them. Because I don’t think a lot of us are aware of what other options we have other than social work.”

Another medical oncologist added wanting more integration with fertility specialists conducting relevant ongoing research at the institute, stating,

“So, if [fertility specialists] can come up, or if they had clinical studies where they're looking at fertility preservation with a different type of harvesting technique that is more palatable, like within two weeks or something, we’d be happy to participate. I think the fertility specialists, you know, they just… nothing against them. They’re great. It would be great to have them on the ground with us.”

Other reported opportunities for filling knowledge gaps included reviews at faculty meetings, formal discussions, formal training, and talks from gynecologists, urologists, or pharmacists.

Patient Preferences and Experiences

Several oncologists reported an interest in learning more about patient preferences surrounding oncofertility counseling and their experiences with counseling and fertility preservation. Specific areas included when patients would like to be provided with oncofertility-related information. One medical oncologist elaborated,

“I’d like to know if there is data about patient preferences, do they want to hear about this at the beginning [of treatment], have there been any questionnaire surveys about this, do they want to hear about it from us or they prefer to hear about it from a navigator or social worker, do they want to know?”

Others emphasized wanting to learn what questions patients have and to ensure that patients have the opportunity to ask questions.

Discussion

This study identified areas of clinical care that represent key opportunities for intervention to increase the delivery of guideline-concordant oncofertility counseling for AYAs with cancer. Recommended interventions spanned enhancements to electronic care systems, dedicated personnel and time, and oncologist education. Notably, these broader improvements to oncofertility depend upon system-specific reorganization of care pathways and a sustained institutional commitment to prioritizing reproductive health within cancer care. Without systemic efforts to improve care, oncofertility will likely remain a prominent unmet need for AYA patients.^20,25

Oncologists in the present study shared that leveraging the EMR to support oncofertility care may facilitate their adherence to fertility discussion guidelines. Prior research has demonstrated the effectiveness of EMR-based interventions in increasing fertility counseling in pediatric and adult care settings.^26,27 For example, in a pediatric academic medical center, AYAs were over three times more likely to receive fertility counseling after an “opt-out” mechanism was implemented in the EMR in which fertility consultations were automatically ordered but could be de-selected by clinicians if not relevant for the patient. ²⁶ Relatedly, oncologists suggested a need for dedicated time to comprehensively discuss fertility with AYAs, reflecting a broader, well-documented trend of increased stressors on the oncology workforce. While larger caseloads and administrative challenges ²⁸ may be partially alleviated by integrating a patient navigator to offset oncologists’ care delivery burden, enhancements to the EMR represent a pathway toward optimizing existing resources for alternative care delivery strategies.

Oncologists suggested that designating a dedicated individual, such as an oncofertility patient navigator, to discuss fertility with patients may facilitate timely implementation of guideline-concordant care. Integrating a patient navigator into cancer care has been documented to exponentially improve counseling, referrals, and fertility preservation across pediatric and adult inpatient and outpatient care settings.^29-33 While findings of the present study and those of prior research underscore the value of integrating oncofertility patient navigators, structural and financial barriers challenge this reality, including reliance on institutional operating funds and navigator classification as a non-reimbursable service by payors. ³⁴ Alternative sustainable funding methods, such as episode-based payment methods proposed by the Oncology Care Model designed to reform payment structures, may create pathways to fund supportive care and mitigate the need for separate reimbursement for navigation services. ³⁵ Additional strategies may include identifying a designated oncofertility counselor that can bill insurance for their services, such as an advanced practice provider, or reallocating the effort of existing staff to designate an oncofertility “champion” responsible for discussing fertility, such as registered nurses who consider fertility discussions within their scope of practice and may be well-positioned to lead counseling.^36-39

In addition to the present study, several studies have identified oncologists’ lack of oncofertility-related knowledge as a key barrier to comprehensive fertility counseling.^16,40-42 While streamlined resources, EMR-based reminders for counseling, and interdisciplinary approaches to care may bridge knowledge gaps, enhancing oncologists’ oncofertility-related knowledge remains essential as they are often the first and sometimes only clinicians to address fertility with patients. As identified in this study, oncologists expressed a need for more education on the broader contexts of oncofertility, such as available patient resources and the financial implications of fertility preservation that often limits access for AYAs. Relatedly, oncologists raised ethical concerns with discussing services that may be unattainable for patients, inhibiting their adherence to clinical practice guidelines.^16,43 Resources such as a patient information page identified in this study may work in tandem to reduce oncologists’ counseling burden and patients’ cost-related barriers as several organizations offer financial assistance for fertility preservation (e.g., LIVESTRONG, Worth the Wait). Further, existing interventions aim to improve clinicians’ oncofertility knowledge and adherence to guidelines (e.g., ENRICH, ECHO), yet broader dissemination and new training initiatives are needed to satisfy persistent gaps.^44-48 Lastly, oncologists emphasized the need for education on patient preferences and experiences, particularly regarding counseling. Research exploring patient perspectives regarding fertility counseling has identified their preference for timely, honest, and in-depth discussions, ⁴⁹ however, effective strategies to operationalize these preferences in clinical care remain understudied. Further research is needed to systematically integrate patient perspectives into oncofertility care models.

Resources, staffing, and infrastructure vary widely across care settings, making it unlikely that each of the identified interventions can be adopted universally. However, even employing a single intervention to improve fertility counseling may represent a meaningful step toward improving the quality of oncofertility care delivery for patients at risk of impaired fertility. Recognizing that identified interventions may not be applicable to all care settings, efforts to intervene upon care should prioritize flexibility and scalability, ensuring resource-limited settings can take actionable steps toward aligning clinical care with guidelines. Importantly, reproductive health is embedded within a complex ethical and regulatory landscape that involves informed consent, evolving assisted reproductive technologies, and state-specific regulations. Within this context, informed consent is becoming increasingly complex, particularly as advances in prenatal diagnosis, fertility preservation options, and emerging gene-based therapies expand reproductive possibilities and ethical considerations for AYAs diagnosed with cancer. As recognized clinical practice organizations emphasize the crucial role of comprehensive oncofertility counseling, suboptimal care delivery may carry ethical and legal implications, including potential liability arising from missed opportunities to provide AYAs with guideline-concordant counseling.^6-12 As cancer treatment and regulatory frameworks continue to evolve, these complexities underscore the need for structured models of oncofertility care delivery that support patient-centered, informed decision-making. We encourage institutions to build upon the aspects of these findings that are relevant for their care setting and intervene upon ongoing practices that may be hindering quality care delivery.

As the implementation of fertility discussion guidelines in practice is poorly understood, this study is among few qualitative studies exploring intervention opportunities to improve oncofertility counseling by providing actionable recommendations from key stakeholders. However, oncologists in the present study were recruited from a single NCI-designated Comprehensive Cancer Center representing “gold standard” care where resources are likely greater than in community settings where most AYAs receive cancer care. Though several areas to improve oncofertility care quality remain in this highly resourced care setting, findings may not generalize to other care settings with differing resources and patient populations. Further, patient perspectives were not included, and the extent to which these recommendations align with patient preferences for counseling cannot be determined. In addition, though we sought to include a range of specialties, hematologic oncologists did not participate in the present study and their perspectives may vary from those who did. Relatedly, participating oncologists may have greater awareness and comfort discussing fertility than non-participating oncologists. Despite these limitations, findings provide valuable insight into oncologist-reported recommendations to improve guideline-concordant oncofertility counseling. Future research should consider characterizing perceived impact and importance of proposed interventions among oncofertility team members.

Conclusion

Comprehensive guideline-concordant oncofertility counseling that affords time to family plan, see a reproductive specialist, and preserve fertility are necessary components of quality oncofertility care delivery. This study identified several distinct opportunities for intervention to improve the provision of guideline-concordant oncofertility care for AYAs with cancer, providing actionable insights into targets for change across both provider- and system-level domains. These findings have broader significance within the rapidly evolving context of cancer treatment paradigms that improve survival while offering uncertain risks to reproductive health. As therapies advance and increase in complexity, fertility counseling may become even more nuanced and difficult to standardize, thereby increasing the need for infrastructure to support consistent guideline-concordant care delivery. Identified interventions offer a scalable framework to facilitate comprehensive oncofertility counseling and delineate pathways by which health systems may translate established guidelines into sustainable clinical practice.

ORCID iDs

Julia Stal https://orcid.org/0000-0002-7911-7388

Charleen I. Roche https://orcid.org/0009-0008-5916-6503

David R. Freyer https://orcid.org/0000-0001-5280-990X

Kimberly A. Miller https://orcid.org/0000-0002-0742-3730

Ethical Considerations

This study followed the Declaration of Helsinki guidelines and was approved by the University of Southern California (USC) Institutional Review Board (IRB; UP-22-00847).

Consent to Participate

Oncologists received an information sheet and verbally agreed to study participation and interview recording before participating.

Data Availability Statement

The data that supports the findings of this study are available in text and tables of this article.*