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.
Keywords
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
Summary of Findings
AYA=adolescent and young adult; EMR=electronic medical record.
Intervention 1: Enhancements to Electronic Care Systems
Integrated System of Care Leveraging Enhancements to the EMR to Facilitate Guideline-Concordant Fertility Discussions for AYAs
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
Designated Oncofertility Resources to Facilitate Guideline-Concordant Fertility Discussions
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
More Education in Order to Deliver Guideline-Concordant Oncofertility Care
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.
Supplemental Material
Supplemental Material - Intervention Opportunities to Increase the Delivery of Guideline-Concordant Fertility Discussions for Adolescents and Young Adults With Cancer
Supplemental Material for Intervention Opportunities to Increase the Delivery of Guideline-Concordant Fertility Discussions for Adolescents and Young Adults With Cancer by Julia Stal, PhD, Charleen I. Roche, BA, Serena Y. Yi, BS, David R. Freyer, DO, MS, Jennifer W. Mack, MD, MPH, Ann H. Partridge, MD, MPH, Kimberly A. Miller, PhD, MPH in Cancer Control.
Footnotes
Author’s Note
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.
Author Contributions
Conceptualization: JS, KAM. Methodology: JS, KAM. Formal analysis: JS, CIR, SYY. Investigation: JS, CIR, SYY. Data curation: JS. Writing- original draft: JS, CIR, SYY. Writing-reviewing & editing: JS, CIR, SYY, DRF, JWM, AHP, KAM. Visualization: JS. Supervision: KAM. Project administration: JS, SYY. Funding acquisition: JS.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Julia Stal was funded by the NCI F99/K00 Predoctoral to Postdoctoral Transition Award (4K00CA284291). Julia Stal also received funding from the University of Southern California (USC) Center for the Changing Family for this study. David R. Freyer and Kimberly A. Miller were supported by NCI P30CA014089.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
The data that supports the findings of this study are available in text and tables of this article.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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