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. 2024 Feb 9;13(1):97–104. doi: 10.1089/jayao.2023.0056

Gaps in Adolescent and Young Adult Cancer Education in Oncology Fellowship Training

Scott Moerdler 1,✉, Adam S DuVall 2, Brandon Hayes-Lattin 3, Allison Grimes 4, Pinki K Prasad 5, John C Molina 6, Varun Monga 7, David R Freyer 8,9, Michael E Roth 10
PMCID: PMC11071107  PMID: 37477884

Abstract

Purpose:

Adolescents and young adults (AYAs, 15–39 years) with cancer experience disparities in care and outcomes compared with older/younger patients. AYAs receive care from medical and pediatric oncologists, however, little is known about the extent of training fellows receive. This needs assessment evaluating current AYA oncology (AYA-O) education in pediatric and medical oncology fellowship programs to identify knowledge gaps for curricular development.

Methods:

An anonymous, cross-sectional, web-based survey developed by pediatric and medical oncologists was sent to medical (n = 178) and pediatric (n = 119) hematology/oncology program directors (PDs) at 251 sites in the United States. PDs were asked to participate and distribute the survey to their fellows. Survey questions addressed current AYA curriculum, provider comfort, and priorities for future AYA educational content.

Results:

Participants from 69/251 programs responded (program response rate = 27%), including 51 PDs (32 pediatric, 19 medical oncology) and 58 fellows (33 pediatric, 25 medical oncology). Eighty-five percent of PDs (44/51) reported lacking formal AYA curricula. Of these, 80% (35/44) offer some topic-specific lectures, while 20% (9/44) provide little/no education for any topics. For nearly all topics, at least 45% of combined respondents reported little/no education. Respondents believe AYA topics are important for inclusion in future curricula. The most important topics for inclusion reported were oncofertility (82%), survivorship (78%), and communication (77%).

Conclusions:

There are large and actionable gaps in AYA-O education during fellowship training. Efforts are underway to develop AYA-O curriculum to provide both medical and pediatric oncology fellows with the knowledge and skills required to provide optimal AYA care.

Keywords: adolescent and young adult oncology, education, fellowship

Introduction

Over two decades ago, adolescent and young adult (AYA) oncology (AYA-O) was recognized as a specialized discipline that is unique in spanning both pediatric and adult oncology.1 When AYAs (age 15–39 years old at diagnosis) are compared with older and younger cancer patients, differences in cancer biology and epidemiology are observed, and disparities in care and outcomes are prominent.2–7 Additionally, AYAs exhibit physiologic differences and face distinct psychosocial challenges.2,8,9 However, given the need for engagement by both adult and pediatric oncologists, it has been difficult to standardize medical training to improve cancer care for this population.

Limited and inconsistent training in AYA-O may be contributing to disparities in care delivery and outcomes for AYAs diagnosed with cancer. For example, survival outcomes differ for AYAs with certain cancer types based on site of cancer care and provider type.10,11 Few AYAs at risk for cancer predisposition syndrome have access to genetic counseling or have genetic testing, and few AYAs at risk for infertility from cancer treatment are presented with options for fertility preservation.12–14

Central to recent recommendations for improving cancer care for AYAs is a focus on enhancing provider awareness and education on the unique needs of this population.15 Dedicated curricula are advised to address the clinical knowledge gap for cancer care providers and their training programs in both pediatric and adult settings.1,16–18 The American Board of Pediatrics subspecialty board-certifying exam content specifications includes topics covering the biological, epidemiological, and psychosocial considerations of AYA. However, the content for the adult board certifying exams is more limited, with the Hematology specifications focusing on content on cancer subtype and the Medical Oncology specifications covering some aspects of survivorship. While the presence of some AYA-O-specific topics, such as sexual health and oncofertility, have been previously examined in limited settings,19 the prevalence of many core AYA-O topics have not been assessed across training programs.

A few institutions have developed and implemented advanced training programs (4th year advanced fellowship, post completion of general pediatric or medical oncology training) to further improve AYA-O knowledge and care delivery. However, little has been published on inclusion of AYA-O education in conventional pediatric and medical oncology fellowship programs across the United States. In 2021, the AYA Oncology Education Working Group was established to assess gaps in the AYA-O education provided to oncology trainees and develop educational interventions to address these knowledge gaps. The group included both pediatric and medical oncologists who practice at academic institutions, are active members of national oncology organizations, and include authors trained in medical education, teaching, and education research. As an initial step toward improving AYA-O training nationally, we conducted a needs assessment evaluating current AYA-O educational content and delivery in pediatric and medical oncology fellowship training programs.

Methods

Overall survey design and development

This cross-sectional study utilized an anonymous electronic survey to identify current trends and perceptions of AYA-O education within oncology fellowship programs in the United States. This was in line with Kerns' curriculum development model20 of a targeted needs assessment. As there is no existing survey tool regarding AYA-O education, a novel survey instrument was developed through a rigorous, iterative review process21 using standards for survey measurement design, with item generation and topics informed by thorough literature search, board certification specifications, and expert consultation, followed by factor analysis and modified Delphi methods. Survey questions asked about respondent demographics, presence of formal AYA curriculum, fellow comfort in managing specific AYA care domains, and priorities for future AYA educational content.

Topics listed in the survey were chosen through expert group consensus, and participants were asked if there were other topics which were not asked about. Based on this process, AYA-O educational topics assessed included cancer epidemiology, biology, treatment approaches, clinical trial recruitment and enrollment, prognosis, oncofertility, sexual health, substance abuse, bioethical issues, barriers to care, psychosocial needs, communicating prognosis and care, cancer predisposition, and survivorship. The survey utilized branching logic based on participants' role (program leadership vs. fellow) to evaluate leaderships' perception of the education they provide and learner's perception of the education they receive. Five-item-anchored Likert scale answers were utilized to assess current amounts of education (no formal education to a great deal of formal education), comfort-managing care domains (not comfortable at all to extremely comfortable), and topic importance for future curricula (not at all important to extremely important).

The survey was piloted by additional pediatric (n = 2) and medical oncology (n = 2) faculty. Feedback was sought regarding the content, comprehensiveness, and clarity of the questions and modifications made in response to the feedback. The final survey (Supplementary Data) was estimated to take <5 minutes to complete. The protocol and survey were deemed exempt by the Rutgers University Institutional Review Board.

Survey dissemination

Utilizing the Qualtrics (Seattle, WA, USA) platform, an electronic survey link was sent through email to pediatric and medical oncology fellowship program directors (PDs) practicing in the United States as identified through the American Medical Association's Fellowship and Residency Electronic Interactive Database Access. PDs were asked to participate and distribute the same survey, which included branching logic, to current fellows. There was no compensation or reward incentive offered for participation. Email invitations with survey links were sent to PDs and associate PDs at 251 hematology/oncology fellowship programs (total: 119 pediatric and 178 adult PDs/Associate Program Directors). Recruitment emails were sent out with personalized follow-up reminder emails. The survey remained open for 3 months (October 2021–January 2022), with three reminders sent during that time.

Statistical analyses

Summary statistics, including frequency, mean, and median, were reported to describe the program demographics and presence of an AYA curriculum and AYA-specific education. Participant responses regarding the level of AYA education and their comfort with each topic was reported for each content area and grouped based on respondent type (PD and trainee). Fisher's exact test and chi square analysis was used to assess for associations between discrete variables. Likert scale answers were collapsed 1–3 (none/minimal/some, not at all/slightly/moderately, not at all/somewhat/neutral, respectively) versus 4–5 (moderate/a great deal, very/extremely, moderately/extremely, respectively) for statistical analyses.

Results

Respondent characteristics

Participants from 69/251 programs participated (program response rate 27%). Of 130 respondents, 112 completed the entire survey (51 PDs [32 pediatric and 19 adults] and 58 fellows [33 pediatric and 25 adults], plus three additional pediatric faculty). Of the 130 respondents, 108 (83%) work at academic medical centers and 4 (3%) at community sites.

Most participants, (72%, 92/130) reported they do not currently have a formal AYA-O curriculum in their fellowship program. Few PDs (15%, n = 7/51) reported the presence of a formal AYA-O curriculum. Of those PDs whose programs have a formal curriculum, all were located at academic medical centers, 5 were pediatric PDs, and 1 worked at a site that offered an advanced AYA 4th year fellowship. Of the PDs whose programs do not offer a formal curriculum, 80% (35/44) offer some topic-specific lectures, while 20% (9/44) reported providing little/no education on any AYA-O topics.

Current level of AYA-O education

Participants rated the degree of formal education for each topic that is currently taught in their fellowship program on a scale of no formal education to a great deal of formal education (Likert scale 1–5) (Fig. 1a). Among all respondents, for nearly all topics, at least 45% reported little/no education. Oncofertility and survivorship were reported as the most frequently taught topics, however, 36% and 42% of all respondents, respectively, reported little/no education in these areas. Substance abuse, bioethical issues, and sexual health were the least commonly taught topics with 77%, 67%, and 65% of all respondents, respectively, reporting little/no education.

FIG. 1.

FIG. 1.

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Perceptions of current amount of education and importance for future curricula based on AYA-O topics. (a) Perceptions of current amount of AYA-O education by all respondents. (b) Perception of current AYA-O education by PDs and fellows. (c) Perception of current amount of topic-specific education in pediatric and medical oncology training programs. (d) Perception of importance of AYA-O topics for inclusion in future curricula. *p < 0.5, **p < 0.01, ***p < 0.001. AYA-O, adolescent and young adult oncology; PDs, program directors.

PDs who stated that they have a formal AYA-O curriculum reported greater education across all topics compared with PDs who do not have a formal curriculum, however, due to the small number of PDs who do offer formal curriculum, this did not reach statistical significance. For nearly all topics, PDs reported more existing AYA education than the fellows reported, with the greatest discrepancy in oncofertility (43% PDs moderate/great deal of education vs. 21% fellows, p = 0.01) (Fig. 1b). For all topics, respondents from pediatric oncology training programs reported substantially more frequent current education compared with adult counterparts, with 11 out of 14 topics reaching statistical significance (Fig. 1c).

Trainee comfort addressing AYA-O care domains

Overall, fellows reported feeling most comfortable addressing oncofertility and survivorship (scale 1–5, mean 2.7 and 2.6, respectively) and least comfortable with bioethics, sexual health, and substance abuse (mean 2.3, 2.3, and 2.1 respectively). For all topics, in general, fellows from pediatric oncology training programs reported higher levels of comfort addressing AYA-O topics with patients compared with medical oncology fellows (Fig. 2).

FIG. 2.

FIG. 2.

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Level of comfort addressing AYA-O topic care domains in pediatric and medical oncology programs. PD and fellow comfort addressing AYA-O relevant care domains. *p < 0.5, **p < 0.01.

Importance of AYA-O topics for future educational curricula

Oncofertility was reported to be the most important topic for inclusion in future education (82% very/extremely important), followed by survivorship (78%), and communication (77%) (Fig. 1d). AYA-O epidemiology and biology were the least important according to participants (54% and 56%, respectively, very/extremely important). For fellows, the level of comfort seemed to trend with the current amount of education provided within individual topics, and importance for inclusion was substantially greater across topics (Fig. 3a–c).

FIG. 3.

FIG. 3.

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Fellow perception of amount of education, comfort addressing, and importance of inclusion of all topics. (a) Fellow perception of the current amount of AYA-O education in fellowship training. (b) Fellow comfort addressing AYA-O care domains. (c) Fellow beliefs on the importance of receiving education in AYA-O care domains.

Discussion

Through this needs assessment, we found a significant gap in education on AYA-O topics during oncology fellowship training. Despite understanding the importance of inclusion in future curricula, both medical and pediatric fellowship program leadership and fellows report that trainees are not receiving sufficient AYA-O education. Importantly, many fellows report not being comfortable addressing these clinical AYA-O needs.

Most respondents noted a lack of formal curricula on AYA-O topics in their fellowship programs, across both pediatrics and adult oncology. Even without a formal curriculum, many PDs did report providing some amount of education across topics. However, there are still a substantial number of programs that provide little/no education on any topics. Even so, more than half of overall respondents thought all the AYA-O topics are important for inclusion in future curricula for fellows. This discrepancy between current amounts and understanding of importance represent an actionable gap in the education we are providing to our trainees.

Regarding specific content areas, it was not surprising that oncofertility and survivorship represent the topics most taught, as these topics are prevalent in the AYA literature and conference content. However, despite the presence of some oncofertility curricula and educational resources, the oncofertility needs of the AYA population are not being met,22–29 as few AYAs are counseled on the opportunity to preserve their fertility before and after treatment. This suggests that the quality and quantity of oncofertility education provided needs to be improved. It also suggests that targeted education for other team members, such as advanced practice providers, nurses, and social workers, could enhance fertility preservation access and utilization.

Participants reported several additional topics as highly important yet infrequently taught. Interestingly, for nearly all topics, PDs perceive that their programs are providing more education and content on specific topics compared with what fellows understand they are being taught. The reason for this discrepancy between the perception of current education between PDs and fellows remains unclear, and is an area for future investigation. This suggests that not only are additional curricular components needed, but also teaching methods could be improved. Variation in receipt of AYA-O education was seen between pediatric and medical oncology fellowship training programs. In this cohort of respondents, pediatric trainees and leaders reported more frequent education across topics. Only two PDs from programs with advanced 4th year AYA-O fellowships participated, while very valuable for the fellows who complete them, the perception of less frequent education by fellows overall, and the limited number of 4th advanced AYA fellowships, highlights that advanced programs are not an effective mechanism for providing all fellows with a baseline level of awareness of the needs of AYAs.

Additionally, it is important to note that the majority of AYAs diagnosed with cancer are treated by medical oncologists, further highlighting the need for targeted AYA-O training for these providers.

While this is the most comprehensive survey to date assessing AYA-O education in pediatric and medical oncology training program, this study has limitations. Not all institutions participated, leading to an overall response rate, which was lower than desired. Given the larger number of medical oncology training programs compared with pediatric programs, and the fact that the majority of AYAs are treated by medical oncology, we would have hoped for a higher proportion of adult involvement. Similarly, it would have been helpful to have a larger number of fellows participate to better understand discrepancies between program leadership who are teaching/educating and the learners themselves. One barrier to higher fellow involvement might have been the fact that PDs were asked to distribute the survey to fellows. To protect anonymity, we did not pair fellow/PD responses based on program. Additionally, this also led to the inability to calculate overall response rate, as we do not know how many fellows ultimately received the survey link. While we do not know how the nonresponders would have responded, these data likely seriously underestimate the gaps in education.

Those interested in AYA-O education may have been more likely to respond, and it is presumed that those without any AYA-O education would be even less inclined to participate. Lastly, we recognize that AYA-O care is an interprofessional and multidisciplinary team approach and this survey did not include other care team providers as the focus was specifically on fellow education.

In summary, we found many gaps in AYA-O education during pediatric and medical oncology fellowship training. To address these gaps, the AYA Oncology Education Working Group is developing a remote educational curriculum to provide additional teaching and resources on AYA-O topics for oncology trainees. The plan is to host monthly live sessions on these topics and provide asynchronous resources for on-demand review and access. The hope is that by providing efficient, high-yield, accessible AYA-O education we can increase oncologists' knowledge and comfort in caring for AYAs and ultimately improve care delivery. Additionally, this is a call to action to our board certifying bodies to incorporate AYA-O topics into certification examinations, thereby endorsing their importance in trainee education. Additional future directions include expanding this evaluation of AYA-O training to other relevant disciplines, including advanced practice providers, nursing, and social work. The goal of these investigations and upcoming novel curricula is to ultimately improve AYA-O patient care by enhancing teaching, education, and clinical comfort of our providers.

Supplementary Material

Supplemental data
Supp_DataS1.docx (30.2KB, docx)

Acknowledgments

The authors would like to acknowledge Elephants and Tea for their partnership in the development and implementation of a remote AYA oncology education curriculum.

Authors' Contributions

S.M.: Conceptualization, methodology, analysis, writing—original draft, review and editing, and supervision. A.S.D., B.H.-L., A.G., P.K.P., J.C.M., V.M., and D.R.F.: Methodology, and writing—review/editing. M.R.: Conceptualization, methodology, writing—original draft, review and editing, and supervision.

Author Disclosure Statement

The authors have no applicable disclosures.

Funding Information

No funding was received for this article.

Supplementary Material

Supplementary Data

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Supplementary Materials

Supplemental data
Supp_DataS1.docx (30.2KB, docx)

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