Dreaming Big: Providing American Society of Clinical Oncology Guideline Concordant Oncofertility Care for Adolescents and Young Adults

Abstract

Purpose:

Fertility preservation (FP) is essential for adolescents and young adults (AYAs) with cancer aged 15–39, yet gaps persist in guideline-concordant care. Despite American Society of Clinical Oncology (ASCO)’s 2018 recommendations, clinician and systemic barriers hinder timely FP counseling. Allied health care professionals (AHPs) play a critical role in supporting patient education and support. This study examined AHPs’ conceptualizations of optimal FP care, assessed alignment with ASCO guidelines, and identified facilitators and barriers to implementation.

Methods:

This study analyzed data from Cohort 4 (2020) of the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) program, an 8-week web-based training for AHPs on AYA reproductive health communication. A directed content analysis was used to qualitatively examine factors influencing FP care delivery. Multilevel themes were analyzed to identify potential mechanisms to facilitate optimal FP care, resources needed for implementation, and barriers to FP patient education.

Results:

Among 130 AHPs (92% female, 72% White), most were social workers (29%) or oncology nurses (25%), working in academic cancer centers (49%). Alignment with ASCO guidelines was observed in fertility risk discussions (72%) and specialist referrals (56%). Key facilitators included patient education (46%), clinician training (48%), and interdisciplinary collaboration (47%). Primary barriers identified were systemic challenges (20%), including financial constraints, limited institutional resources, and time pressures.

Conclusion:

AHPs demonstrated strong commitment to advancing FP care for AYAs with some alignment to ASCO guidelines. Persistent gaps in psychosocial support and system-level resources highlight the need for expanded clinician education, stronger interdisciplinary networks, and institutional prioritization to ensure equitable, developmentally appropriate FP care.

Keywords

adolescent and young adult (AYA) oncology fertility preservation oncofertility care allied health professionals ASCO guidelines implementation science

Introduction

Fertility preservation (FP) discussions are a critical component of comprehensive cancer care for adolescent and young adult (AYA) patients aged 15–39,¹ who may face infertility due to cancer treatment.^2,3 With the increasing incidence of survival rates,^4–6 addressing fertility concerns is essential to support informed decisions about future family-building options and quality of life.^7–11 Despite the American Society of Clinical Oncology (ASCO) 2018 guidelines recommending that clinicians initiate discussions regarding fertility risks and referrals to reproductive health specialists prior to undergoing gonadotoxic therapies,¹² significant barriers remain in delivering FP care.^13,14

Clinician-level barriers to FP care have been well documented in the literature. Oncology clinicians, particularly those without specific training in reproductive health, often feel uncertain about how and when to initiate fertility-related discussions with AYAs.^11,15,16 Some additionally report difficulty identifying which patients are at risk for fertility impairment and locating appropriate services.¹⁷ Further, oncologists, focused primarily on treating the cancer, may prioritize immediate treatment decisions over discussions about potential fertility risks.^18,19 Referral patterns for FP additionally remain suboptimal, with one study finding that less than half of clinicians refer patients to a reproductive specialist when fertility concerns are expressed.²⁰ This finding contradicts ASCO guidelines, which recommend prompt referral for patients who are unsure or express an interest in FP care.¹² These barriers are further compounded by differences in clinical settings. Oncology clinicians at well-resourced institutions, such as National Cancer Institute (NCI)-Designated Cancer Centers, generally have better access to reproductive specialists and clinical collaborations with established referral pathways. In contrast, oncologists in community hospitals or private practices may struggle with limited resources and a lack of referral networks.²¹

Strategies to improve FP care provision among oncology clinicians have been examined.^14,15 A systematic review found that educational programs can effectively increase clinician awareness and confidence in FP discussions with patients.²² Another review found that institutional support, such as clear referral pathways and multidisciplinary collaboration, is essential for integrating fertility counseling into oncology care.¹⁷ However, addressing additional gaps requires a broader, team-based approach.^14,22

Allied health care professionals (AHPs) (e.g., nurses, social workers, psychologists) have emerged as key players in bridging gaps and enhancing FP care.⁷ Although oncologists often focus on immediate cancer treatment, AHPs provide education, psychosocial support, and counseling on broader impacts, including fertility. ASCO guidelines additionally extend the responsibility for FP care coordination to AHPs, recognizing their integral role in addressing emotional and informational patient needs, especially in complex fertility and family-building decisions.⁷ Training AHPs to confidently address fertility concerns can aid in more effective and timely referrals to fertility specialists.²³ However, despite the critical role of AHPs, there has been limited attention on their training and support in accordance with ASCO guidelines.

Given these complexities, this study examines the alignment between AHPs’ aspirational goals for providing optimal FP care within their institutions and ASCO guidelines, identifies potential facilitators and required resources to enhance FP care delivery, and highlights barriers to achieving guideline adherence.

Methods

Data source and study population

This study analyzed data from the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) program, an 8-week web-based training for AHPs to enhance communication skills regarding reproductive health for AYA patients with cancer. Intervention details are published elsewhere.^24,25 Briefly, ECHO was launched in 2017 and provides training on psychosocial, clinical, and skill-building aspects of oncofertility to a national cohort of AHPs. Offered at no cost to participants, it provides continuing education credits upon completion and has demonstrated steady growth in learner engagement.²⁶

As part of the ECHO program, participants were asked to complete the “Dream Big Assignment” (DBA), where they developed action plans for optimizing FP care within their institutions. Action plans included written responses to open-ended questions regarding overarching goals for providing optimal FP care, key action items to achieve goals, necessary resources, responsible personnel, and success indicators. ECHO Cohort 4 (2020) was utilized for this analysis. Those who did not complete the DBA were excluded.

Qualitative study design and data analysis

This study employed a directed content analysis approach,²⁷ drawing on existing theory and literature. Analysis was informed by two key frameworks: the 2018 ASCO guidelines¹² and the Implementation Research Logic Model (IRLM), an implementation science structured framework that systematically identifies and organizes multilevel determinants affecting the adoption, integration, and sustainability of evidence-based practices.^28,29 The IRLM was applied to map facilitating mechanisms and key barriers, providing a structured lens for understanding how multilevel factors shape FP care.

Initial coding categories were derived from ASCO guidelines, which define key clinician responsibilities. Specifically: (1) discussing infertility as a potential risk to cancer treatment and FP options, (2) referring patients who express an interest or uncertainty in fertility to reproductive health specialists, (3) engaging in these discussions and appropriate referrals as soon as possible after a cancer diagnosis, (4) referring patients to psychosocial clinicians when they are distressed about potential infertility, and (5) encouraging participation in registries or clinical trials.¹² Statements were coded as guideline-aligned when they explicitly reflected these responsibilities. Guided by the IRLM framework, additional inductive codes were developed to capture nuances about proposed mechanisms facilitating optimal FP care, resource needs to implement action plans, and current barriers to implementation.

To ensure rigor, two coders (SP, PL) independently analyzed five transcripts, compared the application of codes, refined operational definitions for each code, and reconciled any coding discrepancies through discussion. This process was repeated with an additional 10 transcripts to ensure consistency and reliability. Disagreements were resolved through consensus, resulting in the final codebook. One coder (SP) completed coding the remaining transcripts. Following coding, themes were analyzed by level (patient, clinician, organizational, and system) to identify key mechanisms facilitating optimal FP care, resource needs for implementation, and barriers to implementation. This analysis was determined to be nonhuman subjects research and exempt from institutional review board oversight under institutional self-certification procedures at NYU. Qualitative analyses were conducted using MAXQDA software.³⁰

Results

Participant sociodemographic and institutional characteristics

A total of 130 participants were included in the analysis. The sample was primarily female (92.3%) and White (71.5%). Few (8.5%) participants identified as Hispanic/Latino. Participant professions included social workers (29.2%), oncology nurses (24.6%), and psychologists (17.7%). On average, participants had 11.6 years of experience in their profession (range <1–51) and worked in oncology an average of 7.9 years (range <1–40). Institutional characteristics were distributed across multiple census regions,³¹ with most institutions located in the South (46.2%). Prevalent institutional types were Academic or NCI-Designated Cancer Centers (48.5%). Nearly half of the participants (47.7%) reported having access to AYA programs, and 77.7% had access to fertility navigators (Table 1).

Table 1.

Enriching Communication Skills for Health Professionals in Oncofertility Cohort 4 Participant Characteristics

	Total N = 130 (%)
Sociodemographic characteristics
Gender
Male	10 (7.69%)
Female	120 (92.31%)
Race
America Indian/Alaska Native	1 (0.77%)
Asian	13 (10%)
Black/African American	11 (8.46%)
White	93 (71.54%)
More than 1 race	7 (5.38%)
Unknown or prefer not to respond	4 (3.08%)
Ethnicity
Hispanic/Latino	11 (8.46%)
Not Hispanic/Latino	114 (87.69%)
Unknown	5 (3.85%)
Primary profession
Nurse/Nurse navigator	3 (2.31%)
Nurse practitioner	14 (10.77%)
Oncology nurse	32 (24.62%)
Patient/Family educator	1 (0.77%)
Physician assistant	19 (14.62%)
Psychologist	23 (17.69%)
Social worker	38 (29.23%)
Years in profession (mean, range)	11.57 (<1–51)
Years in oncology (mean, range)	7.89 (<1–40)
Institutional characteristics
Institution region
Midwest	25 (19.23%)
Northeast	23 (17.69%)
South	60 (46.15%)
West	22 (16.92%)
Institution type
Academic or NCI-designated cancer center	63 (48.46%)
Community cancer center	23 (17.69%)
Health system or specialized center^a	25 (19.23%)
Other institution types^b	19 (14.62%)
Access to AYA program
Yes	62 (47.69%)
No	35 (26.92%)
Not sure	33 (25.38%)
Access to navigators
Yes	101 (77.69%)
No	17 (13.08%)
Not sure	12 (9.23%)
Percentage of patients are aged 15–45
1%–25%	35 (26.92%)
26%–50%	71 (54.62%)
51%–75%	15 (11.54%)
76%–100%	9 (6.92%)
Percentage of patients Hispanic/Latino
1%–25%	73 (56.15%)
26%–50%	44 (33.85%)
51%–75%	11 (8.46%)
76%–100%	2 (1.54%)
Percentage of patients Black/African American^c
1%–25%	67 (51.54%)
26%–50%	49 (37.69%)
51%–75%	12 (9.32%)
76%–100%	1 (0.77%)
Percentage of patients White^c
1%–25%	7 (5.38%)
26%–50%	46 (35.38%)
51%–75%	61 (46.92%)
76%–100%	15 (11.54%)
Percentage of patients Asian
1%–25%	100 (76.92)
26%–50%	16 (12.31%)
51%–75%	5 (3.85%)
None	9 (6.92%)
Percentage of patients female^c
1%–25%	3 (2.31%)
26%–50%	78 (60%)
51%–75%	33 (25.38%)
76%–100%	15 (11.54%)
Percentage of patients privately insured^c
1%–25%	24 (18.46%)
26%–50%	67 (51.54%)
51%–75%	33 (25.28%)
76%–100%	4 (3.08%)

Specialized centers include Pediatric Centers and VA.

Other Institution Types include private practice and other types including fertility centers, radiation clinics.

Indicates missing values. Percentage of patients are Black/African American missing n = 1, percentage of patients are White missing n = 1, percentage of patients are female missing n = 1, percentage of patients are privately insured missing n = 2.

AYA, adolescent and young adult; NCI, National Cancer Institute.

Qualitative findings

Conceptual alignment with ASCO guidelines

Analysis of the DBAs revealed that most participants’ action plans reflected conceptual alignment with key elements of the ASCO guidelines (Table 2). Specifically, 71.5% of AHPs included plans to discuss fertility risks with AYAs, and 56.2% highlighted referrals to reproductive health specialists. Engaging in discussions about infertility, FP options, and referrals to reproductive health services were often intertwined themes. One AHP stated, “Optimal care for our AYA patient population would ensure that every single patient of reproductive age receives information, education, and referrals for fertility preservation” (Oncology Nurse). When considering timeliness, 44.6% emphasized the importance of early discussions and referrals to FP services. As one participant noted, “Timely referral for fertility preservation is important and may be better addressed at diagnosis, allowing time to explore options without delaying treatment” (Psychologist). Additionally, 17.7% addressed referrals to psychosocial services, most often citing the need for social workers to provide counseling support. Only 2.3% recognized the importance of engaging patients in FP-related clinical research.

Table 2.

Allied Health Care Professional Goal Alignment with American Society of Clinical Oncology Guidelines

ASCO guideline¹²	Action plan items: Exemplar quotes
Discuss infertility as a potential risk to therapy and fertility preservation options	“Optimal care for our AYA patient population would ensure that every single patient of reproductive age receives information, education, and referrals for fertility preservation.” (Oncology Nurse, Academic or NCI-Designated Cancer Center)“Optimal care would mean that a conversation with every patient about fertility would take place. There would be clear language and compassionate language used to foster dialogue, and enough resources available that fertility options would not be out of reach.” (Psychologist, Community Cancer Center)
Refer patients who express interest in fertility, as well as those who are uncertain, to reproductive specialists	“I think optimal care for this patient population would include knowledgeable providers and team members who had open and honest discussions with patients about fertility preservation prior to initiating treatment for their cancer. It would include a timely referral to a reproductive specialist if the patient was interested in fertility preservation. This type of discussion would take place with all patients of childbearing age and team members would not make assumptions about patients’ wishes without speaking to them about it.” (Oncology Nurse, Academic or NCI-Designated Cancer Center)“The proper referrals and follow up would take place to a local fertility program in order to initiate the process.” (Social Worker, Academic or NCI-Designated Cancer Center)
Discussions and referrals should take place as soon as possible once a cancer diagnosis is made	“Timely referral for fertility preservation is important and may be better addressed at diagnosis, allowing time to explore options without delaying treatment.” (Psychologist, Community Cancer Center)“Ideally addressing fertility issues prior to referral to the cancer center would be in the interest of timely care.” (Oncology Nurse, Community Center)
Refer patients to psychosocial providers when they are distressed about potential infertility	“Then a social worker would come in and help the patient process feelings and make a decision. If the patient needs a little time to decide and needs to talk with family, then the social worker would see the patient the following day and determine a decision because time is still a critical factor.” (Social Worker, Academic or NCI-Designated Cancer Center)“Furthermore, it would be important to involve our social work and behavioral health team to further explore and support our patients with coping and understanding regarding their infertility risks. Currently, every new oncology diagnosis meets with social work and behavioral health, so it would be fitting for them to start to help address the topic of fertility from a financial and psychological perspective.” (Nurse Practitioner, Health System or Specialized Care)
Encourage patients to participate in registries and clinical studies	“Raise awareness and increase informed participation—young people with cancer and their families should know about clinical trial opportunities and their benefits.” (Oncology Nurse, Other Institution Type)

ASCO, American Society of Clinical Oncology.

Despite conceptual alignment with several elements of the ASCO guidelines, none of the participants incorporated all five guideline components into their action plans. As shown in Table 3, most action plans included two (N = 36) or three (N = 34) guideline elements, whereas 12 included four elements, 28 included one element, and 20 did not include any guideline-aligned elements.

Table 3.

Intersecting American Society of Clinical Oncology Guideline Elements Conceptually Reflected in Allied Health Care Professionals Action Plans (N = 130)

ASCO guideline elements
Discuss risks and FP options	Referral to reproductive health specialists	Early discussions and referrals	Referral to psychosocial providers	Encourage participation in registries/clinical studies
No guideline elements reflected (N = 20)
					20
1 guideline element reflected (N = 28)
X					15
	X				9
		X			1
			X		1
				X	2

2 guideline elements reflected (N = 36)
X	X				16
X		X			16
X			X		1
	X	X			1
	X		X		2

3 guideline elements reflected (N = 34)
X		X	X		27
X	X		X		5
X		X	X		1
	X	X	X		1
4 guideline elements reflected (N = 12)
X	X	X	X		11
X	X	X		X	1

FP, fertility preservation.

Mechanisms to facilitate optimal FP care

Several key multilevel mechanisms to facilitate optimal FP care were identified (Table 4). At the patient level, education and resources (45.7%) emerged as a central strategy to enhance understanding and engagement, ensuring that patients are well informed about FP options. Additionally, patient advocacy and support groups were proposed by 10.9% as a mechanism to encourage engagement in FP discussions. Some participants (12.3%) identified strategies targeting patient psychosocial factors that may influence one’s ability to process information, with addressing patient distress as the most noted.

Table 4.

Proposed Mechanisms to Facilitate Optimal, Guideline-Concordant Fertility Preservation Care

Theme	Definition	Example mechanisms
Patient level
Patient education and resources	Providing comprehensive oral and written information about fertility preservation options to patients, along witd tde necessary resources to support decision-making and informed consent.	“Patients could come to one place and get all tde information tdey need to make life-altering decisions about tdeir fertility and reproductive healtd.” (Physician Assistant, Academic or NCI-Designated Cancer Center)
Patient advocacy groups	Support from patient navigators, advocates, or peer support groups that encourage patients to engage in fertility preservation discussions and assist in navigating the complexities of FP care.	“Services, such as peer to peer or support groups, would be available to patients, their partners and family/friends to discuss difficult issues surrounding the current situation.” (Social Worker, Other Institutional Types)
Patient psychosocial factors	The emotional, psychological, and social factors that influence a patient’s ability to process information about fertility preservation, including stress, anxiety, and support needs during cancer treatment.	“Some examples, a patient who is underinsured and does not have money to preserve sperm, a parent who declines intervention because they are uncomfortable talking about sexual health in front of their child, a spouse who cannot cope with the idea of not being able to have their own biological children, etc. In each of these cases, staff could be engaged to have difficult conversations, help families process this aspect of their cancer care, and provide additional supportive services to ensure their wishes are met in a well-informed way. Of note, we have a system that would allow for this process to take place, it’s just a function of manpower.” (Psychologist, Health System or Specialized Care)
Provider level
Provider training and resources	Training providers on infertility risks, fertility preservation techniques, communication strategies, and psychosocial components, ensuring they have the necessary knowledge and resources to support patients effectively.	“Optimal care for AYA patients in our Cancer Center would start with education and understanding of all staff interacting with AYA patients of the unique needs of this population.” (Social Worker, Academic or NCI-Designated Cancer Center)
Provider attitudes	Provider confidence in addressing fertility preservation, a willingness to prioritize patient concerns, and comfort in making appropriate referrals to reproductive health specialists.	“Post-education survey about Nurse’s attitude/comfort/history with talking to patients about oncofertility prior/during chemo/radiation treatment” (Oncology Nurse, Academic or NCI-Designated Cancer Center)
Organizational level
Coordination of care	Ensuring that patients receive continuous follow-up after initial consults to address ongoing needs and ensure seamless access to resources and care.	“The patient would continue to be followed by the Oncologist, nurse, and social worker throughout treatment. The patient and family would be provided counseling services as needed. The chemotherapy and radiation and clinic appointments would all be provided and monitored.” (Social Worker, Academic or NCI-Designated Cancer Center)
Documentation requirements	The need for clear, standardized processes and systems to document fertility preservation discussions, decisions, and referrals in patient records, ensuring accurate tracking and accountability.	“A plan can be deemed successful when documentation can be seen that each patient has had the proper education regarding fertility risk and fertility preservation options.” (Oncology Nurse, Health System or Specialized Care)
Financial support and resources	The availability of financial assistance, insurance coverage, or other resources to reduce the financial burden of fertility preservation services, making them more accessible to patients.	“Collaborate with local and national fertility resources to help assist those AYA patients without insurance.” (Oncology Nurse, Community Center)
Interdisciplinary collaboration	Effective teamwork among oncologists, fertility specialists, and AHPs to improve the quality of care and streamline referrals for fertility preservation, ensuring that all aspects of care are addressed collaboratively.	“Ideally a team-based approach would allow for comprehensive biopsychosocial assessment of each individual patient’s perspectives, concerns, and considerations pertinent to fertility preservation decisions.” (Psychologist, Academic or NCI-Designated Cancer Center)
Quality improvement	Ongoing efforts to evaluate and improve the quality of fertility preservation services, including monitoring, feedback, and adjustments to clinical practices, with the goal of enhancing patient care and outcomes.	“We would look at the difference between the two survey results to see if there was improvement in patient perception of provider knowledge, how many patients had a fertility preservation conversation with their health care team, and how many patients who considered having children in the future were actually referred to a reproductive specialist.” (Oncology Nurse, Academic or NCI-Designated Cancer Center)
Referral requirements	The establishment of clear, efficient referral pathways to reproductive health specialists, ensuring timely and appropriate referrals for fertility preservation services.	“I think optimal care in our cancer center would be implementation of an automatic referral system for any AYA individual who is newly diagnosed with cancer.” (Psychologist, Academic or NCI-Designated Cancer Center)
Strong institutional commitment	Organizational support and leadership that prioritize fertility preservation care, ensuring that providers have adequate time, space, and resources to discuss fertility issues with patients in the context of cancer care.	“I would need to meet with leadership to ensure buy-in from medical providers. To make this a more compelling argument, it could be beneficial to conduct an initial study to examine how many patients discussed infertility and fertility preservation options with medical providers and psychosocial providers, as well as interview patients and families to assess their desire to discuss these options upfront and what is important to them to know and understand. Once leadership is on board, I would want to have a meeting with interested stakeholders to evaluate the current program and determine point-people to help implement the plan.” (Psychologist, Academic or NCI-Designated Cancer Center)
Broad system-level mechanisms	Organizational, structural, and policy-driven mechanisms that support the consistent implementation of best practices for fertility preservation care, ensuring interventions are sustainable and integrated into routine clinical workflows.	“Decrease the workload and thus optimize work time for other providers who have been shouldering this burden in addition to their other worktime activities.” (Psychologist, Health System or Specialized Care)

AHP, allied health care professional.

At the clinical level, 48.1% of participants identified clinician training and resources as a central strategy, emphasizing the need to educate oncology clinicians on fertility risks and referral options to overcome hesitancy and ensure timely information. One AHP highlighted, “Optimal care for AYA patients in our Cancer Center would start with education and understanding of all staff interacting with AYA patients of the unique needs of this population” (Social Worker). A smaller proportion of participants (4.6%) included targeted efforts to address clinician attitudes, aiming to increase clinician willingness and confidence in offering appropriate FP care.

A significant portion of the identified mechanisms at the organizational level, with 46.5% of participants emphasizing their importance. A critical mechanism highlighted by many AHPs was interdisciplinary collaboration. Many participants emphasized the value of team-based care, with one participant noting, “Ideally, a team-based approach would allow for comprehensive biopsychosocial assessment of each individual patient’s perspectives, concerns, and considerations pertinent to fertility preservation decisions” (Psychologist). Additionally, strong institutional commitment (33.3%) was recognized as a facilitator, describing how institutional buy-in could help drive the development and implementation of FP initiatives.

Other broad system-level mechanisms identified included financial support and resources (24.8%) critical for ensuring access to FP services, referral requirements such as establishing clear referral pathways, and fostering external collaborations and partnerships with reproductive health specialists (20.9%). Effective coordination of care (20.2%) emerged as a key mechanism, ensuring that follow-up and seamless access to resources are maintained. Many participants also highlighted the importance of quality improvement and tracking (26.4%) to continuously monitor and enhance the integration of FP discussions into routine care. Mechanisms such as EPIC alerts, dashboards for tracking referrals, and automated referral processes were considered essential for ensuring timely and efficient implementation. Additionally, standardized documentation requirements (20.2%) were highlighted, stressing the need for institutionalized processes to track FP discussions and referrals. Finally, several participants emphasized leveraging existing oncofertility program models and external partnerships rather than creating entirely new workflows.

Resource needs

AHPs identified several essential resources necessary to optimize proposed mechanisms for FP care, often with one-word responses. The most frequently cited need was time (43.5%), with many emphasizing the importance of allocating sufficient time for FP discussions, follow-up care, and the planning and implementation of action items. Clinician training resources (37.4%) were recognized as a critical need, with participants stressing the importance of enhancing clinicians’ knowledge and skills in delivering effective FP counseling. The need for additional personnel (34.8%) emerged as another key resource, with AHPs advocating for the inclusion of roles such as AYA coordinators, nurse navigators, social workers, and reproductive health specialists to ensure comprehensive care and adequate patient support.

Financial resources (29.8%) were also frequently cited as a key need, with participants emphasizing the importance of securing sufficient funding to support action items such as personnel salaries, electronic medical record (EMR) implementation, and patient assistance, ensuring the availability and sustainability of FP services within their institutions. A small number of participants also referenced the financial burden associated with long-term gamete storage, including for pediatric populations, noting limited funding mechanisms to support extended storage costs (e.g., maintaining cryopreserved gametes until adulthood).

The availability of patient educational resources (27%) was considered crucial, ensuring that patients are provided with the educational materials and resources to be well informed about their risks and FP options. Additionally, EMR improvements (26.1%) were noted, with AHPs emphasizing the need for better EMR systems (e.g., order forms, other functionalities) to more effectively track FP discussions and referrals. The need for adequate physical space (24.4%) was mentioned to ensure sufficient room for FP counseling, host patient advocacy groups, hold planning meetings, and in-person clinician training. Finally, data needs (20.9%) were highlighted as a critical resource for monitoring and evaluating FP care. AHPs suggested using needs assessment data to address care gaps and data from the literature to implement evidence-based practices, thereby enhancing the overall effectiveness of FP care.

Barriers

Although understanding current barriers to FP implementation was not the primary focus of the DBA, a third of participants noted challenges that hinder current optimal guideline-concordant FP care. Reported barriers spanned multiple levels, including patient and caregiver distress, clinician knowledge gaps, and the urgency of initiating cancer treatment, which limits opportunities for fertility discussions. Systemic challenges were commonly cited, such as institutional and logistical barriers, financial constraints, and limited resources or infrastructure. A few participants highlighted cultural barriers, including stigma and disparities related to gender and sexual orientation. Collectively, these findings highlight the multilevel obstacles that continue to impede equitable FP care.

Discussion

This study contributes to novel insights into the aspirations of AHPs and identifies key barriers and potential mechanisms that facilitate optimal FP implementation. Although previous research has largely emphasized oncologists’ role in FP care,^7,24,32 results highlight the possible ways that AHPs can contribute to optimizing fertility-related decisions. By examining AHPs’ perspectives, findings highlight areas of aspirational alignment with ASCO guideline-concordant components and persistent gaps, reinforcing the need for a multidisciplinary approach to FP care. Results provide actionable recommendations for enhancing clinician education, institutional support, and systemic policies to improve FP access.

Although many health care clinicians recognize the importance of FP discussions and referrals to reproductive specialists, gaps remain in the scope of their planned and intended FP care efforts. Prior clinician-focused literature has documented persistent gaps in guideline-concordant referral practices and documentation, frequently citing time constraints, competing treatment priorities, and insufficient reproductive health training as barriers.^13,16,17 Encouragingly, AHPs in our study articulated strong aspirational alignment with guideline-concordant FP care, particularly in planned discussions of fertility risks and referrals to reproductive specialists. This contrast suggests that AHPs’ professional orientation toward patient education, psychosocial support, and care coordination may position them as valuable partners in operationalizing guideline implementation within multidisciplinary oncology settings. Findings from this study highlight the potential to expand oncofertility education beyond oncologists to a broader range of clinicians.

Prior research has demonstrated that early FP discussions can improve patient access to fertility services and reduce decisional regret,^{17,22,33–38} making these high rates of planned action items a promising finding. However, results also indicate that psychosocial support referrals and engagement in FP-related clinical research were less frequently cited as planned priorities. Given the well-documented emotional burden of fertility loss among young cancer patients,^39–41 this suggests that although AHPs acknowledge the importance of these elements, they may perceive barriers or lack clear strategies for implementation. Addressing gaps through targeted education, interdisciplinary collaboration, and system-level interventions could help translate these intended FP care goals into consistent, comprehensive clinical practice.

A unique contribution of this study is the focus on the multilevel mechanisms AHPs identify as crucial for facilitating optimal FP discussions and referrals. Many of our findings align with existing literature demonstrating that clinician training and institutional resources are key enablers of FP care.^23,42 Notably, AHPs emphasized the importance of structured FP training programs, decision-support tools, and EMR integration, which are interventions that have been previously shown to improve FP counseling rates and documentation.^22,24

Despite these facilitators, systemic barriers continue to hinder FP implementation, many of which have been well documented in the literature, including time constraints, clinician knowledge gaps, and financial burdens.^16,43 This study also prompts discussions surrounding FP access by reinforcing the need for institutional mandates and financial support programs to address economic barriers. Prior research has established that the high cost of FP services remains a significant obstacle for many AYA patients with cancer, particularly those without insurance coverage.^44,45 Our findings suggest that AHPs recognize the impact of these financial constraints but may lack the institutional resources to effectively support patients in overcoming them. Expanding financial assistance programs, advocating for insurance coverage mandates, and implementing standardized FP documentation policies within their institutions could help reduce disparities and ensure that all eligible patients receive fertility counseling and referrals.⁴²

This study is not without limitations. Data were collected during the early COVID-19 period in 2020, which may have influenced participants’ perceptions of institutional capacity, staffing, and access to FP services. Additionally, this study examined aspirational action plans rather than directly observed clinical behaviors. Therefore, alignment with ASCO guidelines reflects intended priorities and conceptual commitments rather than verified implementation in routine practice. The cross-sectional design limits the assessment of whether proposed plans were enacted or sustained over time. Finally, reliance on self-reported data may be subject to social desirability bias, as participants may have provided responses they believed were expected or more favorable. Future research should explore these dynamics longitudinally and in varied settings.

Since 2020, when these data were collected, oncofertility care has continued to evolve. Recent updates to the ASCO clinical practice guideline emphasize integration of FP discussions across the cancer care continuum, including survivorship care, and highlight the responsibility of providers to assess and address reproductive goals at any stage of treatment, including survivorship.⁴⁶ The updated recommendations also call for advocacy for comprehensive insurance coverage of FP services, including long-term storage, parity with other benefits, and elimination of prior authorization barriers, while supporting clinic-based infrastructure to help patients access these benefits.⁴⁶ In parallel, institutions have expanded telehealth integration^47,48 and EMR-based referral prompts and documentation systems to facilitate implementation.^3,48 Despite these advances, recent studies continue to document persistent geographic and socioeconomic disparities in access to fertility services, highlighting the need for sustained multilevel implementation efforts that equip AHPs with the training, institutional support, and workflow integration necessary to translate guideline recommendations into routine practice.²¹

Conclusion

The aims of this study provide a unique perspective on the role of AHPs in FP care and identify key mechanisms for improvement at the patient, clinician, and organizational levels. By addressing knowledge gaps, enhancing system-level interventions, and implementing financial equity measures, institutions can move toward a more comprehensive and inclusive model of FP care for AYA patients with cancer. The findings of this study highlight the critical role AHPs can play in prioritizing FP discussions and referrals, while also emphasizing the challenges and resources needed to optimize FP care. Although many AHPs articulated alignment of their FP care priorities with ASCO guidelines, gaps in implementation persist, highlighting the need for targeted interventions to improve clinician training, institutional support, and interdisciplinary collaboration. Addressing identified systemic barriers is essential to ensuring equitable access to FP services. By building on established FP programs and best practices, institutions can strengthen their existing frameworks, ultimately delivering more comprehensive, evidence-based, and guideline-concordant FP care for AYAs.

Authors’ Contributions

S.P.D.: Conceptualized and designed the study, conducted data analysis, and led manuscript writing. G.P.Q. and S.T.V.: Led the parent ECHO study and contributed to study design, data acquisition, and critical revision of the manuscript. W.S.R., E.R.W., and M.B.: Contributed to study design, interpretation of findings, and critical revision. P.L.: Contributed to qualitative analysis and critical revision. B.A.: Contributed to data collection, data management, and manuscript revision. All authors reviewed and approved the final manuscript.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This project has been supported in part by the ECHO R25 Grant NIH/NCI R25CA142519; the T32 CA00946 (multiple principal investigators: Jennifer Hay/Jamie Ostroff) and P30 CA008748 (principal investigator: Selwyn Vickers) (Authors: SPD and MB).

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