In 2015, this core of authors wrote a "state of the union" overview of AYA oncology care at the time titled "Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence." Since then, the landscape of cancer care in this unique population has changed, with encouraging improvement in some areas and persistent challenges in others. Ten years later, we have decided to update our review to demonstrate how far we have come in caring for 15 to 39-year-olds with cancer in the United States and how much further we need to go to truly improve both their short and long-term outcomes. Back in 2015, we described the field as in its late adolescence, still trying to define itself. With this 2-part review, we hope to demonstrate that as a subspecialty, it has grown up but is still trying to firmly establish its place in the larger world of oncology, much like a young adult that has moved away from home and is establishing its own identity in a changing world. In the first part of our update on the state of adolescent and young adult (AYA) oncology in the United States in 2025, we reviewed the epidemiology of AYA cancers (those in 15 to 39-year-olds) as well as the advancements in the management of acute lymphoblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcomas in this population. In this second part, we review the topics of clinical trial enrollment, models of care, the psychosocial impact of cancer in this population and survivorship.

ABSTRACT INTRODUCTION Vincristine sulfate liposome injection (VSLI), a liposomal formulation of vincristine, may be better tolerated than standard aqueous vincristine and enable dose intensification. PROCEDURES Based on single‐agent tolerability, activity, and FDA approval in adults with acute lymphoblastic leukemia (ALL), we tested the safety and feasibility of VSLI as replacement for standard vincristine in the UK ALL R3 mitoxantrone‐based four‐drug induction (Cohort A), a three‐drug anthracycline‐free induction (Cohort B), and maintenance chemotherapy (Cohort C) in children and young adults with relapsed/refractory B‐cell ALL. RESULTS Among 29 participants with a median age of 12.4 years (range: 1.8–19.6 years), 16 received Cohort A, eight received Cohort B, and five received Cohort C therapy. Dose level 1 (DL1): 1.5 mg/m 2 and dose level 2 (DL2): 2 mg/m 2 of VSLI, each without a dose cap, were tested. Collectively, the median VSLI dose administered was 1.9 mg (range: 0.71–4.06 mg), and 13 (44.8%) received a dose above the standard 2 mg vincristine dose cap. Dose‐limiting toxicities (DLTs) at DL2 were seen in three patients, two in Cohort A and one in Cohort B, prompting further evaluation at DL1 for both cohorts. No DLTs were experienced at DL1. Only DL2 was tested in Cohort C—without DLT. Complete remissions were seen in 14 of 16 (87.5%) participants in Cohort A; three of eight (37.5%) in Cohort B; and one (20%) in Cohort C. VSLI with combination chemotherapy at DL1 was generally well tolerated. CONCLUSION Based on the promising response signal in this heavily pretreated population, further study of VSLI is warranted. (ClinicalTrials.gov NCT02879643)

In 2015 this core of authors wrote a "state of the union" overview of AYA oncology care at the time titled "Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence." Since then, the landscape of cancer care in this unique population has changed, with encouraging improvement in some areas and persistent challenges in others. Nine years later, we have decided to update our review to demonstrate how far we have come in caring for 15 to 39-year olds with cancer in the United States and how much further we need to go to truly improve both their short-term and long-term outcomes. What started as a call to arms after the AYA-specific Progress Review Group (PRG) in 2006 became a national initiative, which has had successes and failures nationally, regionally, and locally in trying to move the needle for a group of patients that continues to straddle both the pediatric and adult oncology worlds. Back in 2015, we described the field as in its late adolescence, still trying to define itself. With this 2-part review, we hope to demonstrate that as a subspecialty it has grown up but is still trying to firmly establish its place in the larger world of oncology, much like a young adult that has moved away from home and is establishing its own identity in a changing world. In part 1 we focus on epidemiology of AYA cancer as well as acute lymphoblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma in this unique population of patients.

Langerhans cell histiocytosis (LCH) is a myeloid neoplastic disorder characterized by lesions with CD1a-positive/Langerin (CD207)-positive histiocytes and inflammatory infiltrate that can cause local tissue damage and systemic inflammation. Clinical presentations range from single lesions with minimal impact to life-threatening disseminated disease. Therapy for systemic LCH has been established through serial trials empirically testing different chemotherapy agents and durations of therapy. However, fewer than 50% of patients who have disseminated disease are cured with the current standard-of-care vinblastine/prednisone/(mercaptopurine), and treatment failure is associated with long-term morbidity, including the risk of LCH-associated neurodegeneration. Historically, the nature of LCH-whether a reactive condition versus a neoplastic/malignant condition-was uncertain. Over the past 15 years, seminal discoveries have broadly defined LCH pathogenesis; specifically, activating mitogen-activated protein kinase pathway mutations (most frequently, BRAFV600E) in myeloid precursors drive lesion formation. LCH therefore is a clonal neoplastic disorder, although secondary inflammatory features contribute to the disease. These paradigm-changing insights offer a promise of rational cures for patients based on individual mutations, clonal reservoirs, and extent of disease. However, the pace of clinical trial development behind lags the kinetics of translational discovery. In this review, the authors discuss the current understanding of LCH biology, clinical characteristics, therapeutic strategies, and opportunities to improve outcomes for every patient through coordinated agent prioritization and clinical trial efforts. Langerhans cell histiocytosis is an inflammatory myeloid neoplastic disorder driven by activating somatic mutations in mitogen-activated protein kinase pathway genes. Rapid advances in mechanistic understanding of Langerhans cell histiocytosis now offer opportunities to improve outcomes for patients.

Juvenile xanthogranuloma (JXG) is a clonal non-Langerhans cell histiocytic disorder characterized by a variety of cutaneous and non-cutaneous manifestations, predominantly in children. The mitogen-activated protein kinase pathway (MAPK) is a key driver in many histiocytic disorders, including JXG. We report a rare presentation of JXG in the mastoid bone of a which recurred after surgery and was refractory to two lines of chemotherapy before responding to the MEK inhibitor trametinib, even in the absence of an identifiable MAPK pathway mutation. MEK inhibitors may be a therapeutic option for this sometimes difficult to treat disease.

Adolescents and young adults (AYAs) with cancer are a unique patient population in oncology. An opt-in, secure online survey was conducted among a general population of AYA patients and survivors to better understand the current landscape of AYA cancer. A 28-item online survey was designed for cancer patients and survivors diagnosed between the ages of 18 and 39 years. It comprised questions about demographics, treatment site, clinical trial involvement, support services available, and impact on employment, schooling, and finances. A total of 590 patients registered and 447 (76%) completed the survey. This online exercise was found to be feasible and can serve as an effective method to survey the AYA cancer population.

Background The Florida Association of Pediatric Tumor Programs (FAPTP) has used the Statewide Patient Information Reporting System (SPIRS) since 1981 to track all new cases of pediatric cancer. We reviewed the last 40 years of data to see how pediatric cancer care has evolved. Methods We retrospectively analyzed SPIRS data from 1981 through 2020 in five-year increments, looking at numbers of new diagnoses, care delivery sites, and trial enrollment in Children’s Oncology Group (COG) studies. Results From 1981-2020 Florida’s population increased almost 88% while the pediatric population only grew 61%. New pediatric cancer diagnoses increased 326% to over 1,000 new cases/year. The percentage of patients treated at FAPTP centers grew from 30% to 57% with an annual percentage change (APC) of 10.3% (95% Confidence Interval [CI] of 0.6 to 20.9%). The rate of COG clinical trial enrollment decreased from 32% in 1981-1985 to 20% in 2016-2020, for an APC of 8.91% (95% CI of -13.3 to -4.3%). Conclusions The striking increase in pediatric cancer cases in Florida over the last 40 years was out of proportion to the population growth. More patients received care at FAPTP centers, but a lower percentage were enrolled on COG trials.

Survival outcomes for relapsed/refractory pediatric acute myeloid leukemia (R/R AML) remain dismal. Epigenetic changes can result in gene expression alterations which are thought to contribute to both leukemogenesis and chemotherapy resistance. We report results from a phase I trial with a dose expansion cohort investigating decitabine and vorinostat in combination with fludarabine, cytarabine, and G-CSF (FLAG) in pediatric patients with R/R AML [NCT02412475]. Thirty-seven patients enrolled with a median age at enrollment of 8.4 (range, 1-20) years. There were no dose limiting toxicities among the enrolled patients, including two patients with Down syndrome. The recommended phase 2 dose of decitabine in combination with vorinostat and FLAG was 10 mg/m(2). The expanded cohort design allowed for an efficacy evaluation and the overall response rate among 35 evaluable patients was 54% (16 complete response (CR) and 3 complete response with incomplete hematologic recovery (CRi)). Ninety percent of responders achieved minimal residual disease (MRD) negativity (<0.1%) by centralized flow cytometry and 84% (n = 16) successfully proceeded to hematopoietic stem cell transplant. Two-year overall survival was 75.6% [95%CI: 47.3%, 90.1%] for MRD-negative patients vs. 17.9% [95%CI: 4.4%, 38.8%] for those with residual disease (p < .001). Twelve subjects (34%) had known epigenetic alterations with 8 (67%) achieving a CR, 7 (88%) of whom were MRD negative. Correlative pharmacodynamics demonstrated the biologic activity of decitabine and vorinostat and identified specific gene enrichment signatures in nonresponding patients. Overall, this therapy was well-tolerated, biologically active, and effective in pediatric patients with R/R AML, particularly those with epigenetic alterations.

A 15-year-old male with a mesenteric desmoid tumor and underlying familial adenomatous polyposis presented 2 weeks after initiating sorafenib with severe abdominal pain and chills and was found to have an acute abdomen. Exploratory laparotomy revealed a necrotic, ruptured tumor with impending small bowel obstruction. The patient was later able to resume sorafenib and experienced sustained a radiographic response. It is possible that sorafenib toxicity contributed to tumor rupture yet later provided clinical benefit. Here we review the gastrointestinal complications that are associated with intra-abdominal desmoid tumors and their therapies.

Introduction: Vincristine intensification has the potential to improve outcomes in ALL, but severe neurotoxicity has prohibited escalation beyond standard capped doses. Vincristine sulfate liposome injection, VSLI (Marqibo®) is a liposomal formulation of aqueous vincristine that optimizes pharmacokinetics, prolongs circulating half-life, increases tissue penetration, and may be better tolerated than standard vincristine. VSLI received accelerated FDA approval for adults with relapsed/refractory (r/r) ALL, at a dose of 2.25 mg/m 2/dose without a dose cap. A phase I trial of VSLI in children and young adults with r/r ALL demonstrated safety, tolerability, and evidence for single-agent activity (Shah NN, et al. Pediatric Blood Cancer, 2016). Studies of VSLI with combination chemotherapy in children have not been conducted. With emerging data supporting improved outcomes for patients (pts) with r/r ALL who proceed to immunotherapy with low-burden disease, identifying safe and effective reinduction regimens to reduce disease burden remains a priority.

OBJECTIVE:This study aimed to determine if AYA oncology patients experienced a quantifiable improvement in psychosocial outcomes after attending a weekend retreat with their peers. METHODS:AYA oncology patients attended a weekend retreat. They completed the Functional Assessment of Cancer Therapy - General (FACT-G) before, 1 month after, and 6 months after the weekend retreat. Controls were age-matched oncology patients who did not attend the retreat. FINDINGS:Retreat participants' scores did not significantly change over time; however, retreat participants' scores at 1-month follow-up were significantly higher than control group scores. CONCLUSIONS:AYA oncology patients may experience transient improvement in psychological well-being after attending a retreat, but benefits may not be durable. Work remains needed to examine the impact of retreat attendance on specific aspects of psychosocial well-being. Implications for psychosocial oncology: Work is needed to decrease perceived attendance barriers for AYA oncology patients who have a low quality of life. Future retreat planners may consider modifying retreat activities and consider alternative retreat locations that appeal to campers with limited mobility, chronic pain, and/or other quality of life limitations. Additional study is needed to determine whether brief overnight or weekend retreats can be as effective as week-long camps in enhancing oncology patients' quality of life. Future researchers should compare changes in weekend retreat attendees' quality of life to changes in quality of life for a control group (e.g., via a waitlist control study design).

BACKGROUND:Children with acute lymphoblastic leukemia (ALL) require central lines to facilitate their care. Peripherally inserted central catheters (PICCs) may have lower rates of central line-associated bloodstream infections (CLABSIs) versus other central lines.OBJECTIVES:The objective of this study was to compare the CLABSI rate in the first month of therapy after initiating a policy to place PICCs in new patients with severe neutropenia (SN) and Mediports in those with moderate-to-no neutropenia. We also examined thrombosis rates.DESIGN/METHOD:We prospectively gathered data on new patients for 2.5 years following the policy change and retrospectively for the 2 years prior and compared rates of CLABSIs and thrombosis.RESULTS:CLABSIs decreased in SN patients from 7.52/1000 to 3.11/1000 line days (P=0.33). The CLABSI rate for all patients with SN who had a Mediport was 13.39/1000 versus 4.08/1000 line days for those that received PICCs (P=0.15). The thrombosis rate for Mediport patients was 3.13 clots/1000 versus 7.65/1000 line days for PICC patients, but the difference was not significant (P= 0.11).CONCLUSION:The differences observed suggest that placing PICCs versus Mediports in new ALL patients with SN may result in a lower incidence of CLABSIs in the first month of therapy without a significant increase in thrombosis.

FPBCC was formed in 2018 by five pediatric transplant programs in Florida. One of the key objectives of the consortium is to provide outcome analyses by combining HCT data from all the participating centers in order to identify areas for improvement. In this first FPBCC landscape report we describe the patient and transplant characteristics of pediatric patients undergoing first allo and auto HCT between 2014 and 2016 in Florida. The source of data was eDBtC of the CIBMTR. Over the span of 3 years, a total of 230 pediatric patients underwent allo-HCT and 104 underwent auto-HCT at the participating centers. The most significant predictor of survival in allo-HCT recipients with malignant disorders was the degree of HLA- match, while in the recipients of allo-HCT with non-malignant disorders the predictors of survival included age, donor relationship and degree of HLA match. Our analyses identified the need to improve reporting of primary cause of death and improve on donor selection process given that the degree of HLA match remains the most important predictor of survival. This first FPBCC-wide review describes the trends in pediatric HCT activity between 2014 and 2016 among the participating centers in Florida and confirms feasibility of using eDBtC data platform and collaborative approach in order to identify areas for improvement in outcomes.

Florida, with 4.1 million children, has six small pediatric BMT programs which are distributed across the state facilitating access to transplant. However, the literature indicates a survival advantage when transplants are done in a larger center with disease-specific expertise. In addition to lack of expertise across all diseases, it is more difficult for smaller centers to use their experience to improve patient outcomes as each center's analyses are skewed due to small number of transplants. In 2018, five Florida Pediatric BMT centers formed a consortium (Florida Pediatric BMT and Cell Therapy Consortium – FPBCC) with the goal of sharing data, clinical collaboration, and increasing patient base for retrospective and early stage clinical trials. The ultimate goal is to increase knowledge about utilization of pediatric BMT and its outcomes in a geographically defined population of children. This knowledge will help develop interventions for practice improvement. After signing a memorandum of understanding for FPBCC and data use agreements, and after obtaining IRB approvals for retrospective data analyses, we gathered data from all pediatric BMT transplants performed in 5 Florida Pediatric BMT centers between 2014 and 2016. We utilized the CIBMTR eDBtC (enhanced data back to center) platform to gather data reported to the CIBMTR. De-coded CIBMTR data were downloaded by each center and forwarded to the FPBCC for analysis. Four hundred and fifteen transplants were done in the five Florida centers over the 3-year study period. However, we present 377 transplants performed in 301 children who were ≤18 years at the time of transplant. The majority (58%) of first transplant recipients were male, 28% were ≤3 years of age and 68% were ≤10 years of age at time of transplant. By race, the majority of recipients were Caucasians (70%) followed by AA (21%). The majority of transplants (61%) were allogeneic with 81% of them being first, and 9% being second or a subsequent transplant. Unrelated donor was the most common donor type (64%). Among related transplant donors, 25% were mismatched. Bone marrow was used as a stem cell source in 58% of first allogeneic transplants, cord blood in 26%, and PBSCs in 16%. Among autologous transplants, 38% were second or subsequent transplant. The most common indications for allogeneic transplant were acute lymphoblastic leukemia (33%), myelogenous leukemia (20%) sickle cell disease (8%) and primary immune deficiencies (5%). In the autologous group, the most common indication for transplant was neuroblastoma (37%), followed by medulloblastoma and other brain tumors (18% each). We showed that data obtained through collaboration of programs using the eDBtC platform could lead to better understanding of activity and trends in transplant in a defined patient population. This consortium will continue with data validation and analyses in order to identify areas for improvement.

Journal of Adolescent and Young Adult OncologyVol. 6, No. 4 PerspectiveOpen AccessSink or Collaborate: How the Immersive Model Has Helped Address Typical Adolescent and Young Adult Barriers at a Single Institution and Kept the Adolescent and Young Adult Program AfloatDamon R. Reed, Benjamin Oshrine, Christie Pratt, Olivia Fridgen, Cathy Elstner, Leila Wilson, Hatem Soliman, Marie C. Lee, Howard L. McLeod, Bijal Shah, Kristine A. Donovan, Smitha Pabbathi, Mary Turney, Odion Binitie, Christine Healy, Michael Nieder, Peter H. Shaw, Andrew Galligan, G. Douglas Letson, Marilyn Stern, Gwendolyn P. Quinn, and Simon DaviesDamon R. ReedAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Sarcoma Department, Moffitt Cancer Center, Tampa, Florida.Department of Individualized Cancer Management, Personalized Medicine Institute, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Benjamin OshrineCancer and Blood Disorders Institute, Johns Hopkins All Children's Hospital, St. Petersburg, Florida.Search for more papers by this author, Christie PrattAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Sarcoma Department, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Olivia FridgenAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Cathy ElstnerAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Sarcoma Department, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Leila WilsonAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Sarcoma Department, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Hatem SolimanBreast Oncology, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Marie C. LeeBreast Oncology, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Howard L. McLeodDepartment of Individualized Cancer Management, Personalized Medicine Institute, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Bijal ShahMalignant Hematology, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Kristine A. DonovanSupportive Care Medicine, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Smitha PabbathiInternal Medicine Department and Survivorship Program, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Mary TurneyPatient and Family Services, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Odion BinitieAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Sarcoma Department, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Christine HealyPatient and Family Services, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Michael NiederBMT Program, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Peter H. ShawCancer and Blood Disorders Institute, Johns Hopkins All Children's Hospital, St. Petersburg, Florida.Search for more papers by this author, Andrew GalliganDepartment of Pediatrics, University of South Florida, Tampa, Florida.Search for more papers by this author, G. Douglas LetsonSarcoma Department, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Marilyn SternDepartment of Child and Family Studies, University of South Florida, Tampa, Florida.Health Outcomes and Behavior Program, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Gwendolyn P. QuinnAdolescent and Young Adult Oncology Program, Moffitt Cancer Center, Tampa, Florida.Health Outcomes and Behavior Program, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, and Simon DaviesTeen Cancer America, Los Angeles, California.Search for more papers by this authorPublished Online:1 Dec 2017https://doi.org/10.1089/jayao.2017.0051AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail IntroductionThe unique needs of adolescent and young adult (AYA) oncology patients have been identified through research and well described in the literature.1–4 Defined as individuals aged 15–39 years, these patients benefit from age-appropriate multidisciplinary care with attention to psychosocial, fertility, financial, and physical effects of cancer, from diagnosis through survivorship. These are termed the pillars of AYA care. With the goal of improving outcomes for the 72,000 AYA patients diagnosed with cancer every year in the United States, AYA programs are being developed.Organizations such as Teen Cancer America (TCA, www.teencanceramerica.org) and Critical Mass (criticalmass.org) provide advocacy, collaboration, and resources for personnel, as well as physical space for AYA patients at major medical centers. Early reports of successful programs have been mitigated more recently by recognition of real barriers to successful program development, prompting an ongoing national dialogue. This article seeks to examine our institution's model and offer solutions to overcome real and perceived barriers to optimal AYA oncology care.Specifically, we examine our institution's model that involves a pediatric oncologist AYA champion employed within an adult cancer center, which we term the Immersive Model. This differs from other models that typically separate pediatric and adult oncology by building and department or medical group. Traditionally, AYA programs have been created to bridge the gap between pediatric and adult centers, often using acute lymphoblastic leukemia (ALL) care as a model. Pediatric oncologists would expand the age of patients seen upward, to provide direct care or participate in tumor boards with adult medicine colleagues. There is a data-driven consensus in the pediatric oncology community that so-called pediatric-inspired regimens improve outcomes for AYA patients compared with standard adult approaches for ALL and a perception that the medical oncology world has been slow to universally adopt these regimens with variation in levels of adoption across centers.5–8 Controversy regarding the optimal treatment for ALL continues at many centers, causing AYA program growth to be hindered.Moffitt Cancer Center (MCC) is a National Cancer Institute-designated Comprehensive Cancer Center based in Tampa, Florida that is uniquely organized by multidisciplinary disease teams rather than the more traditional model of departments of medicine, surgery, and other specialties. Thus, it is common for physicians to report to chairs with different, medical, or surgical, for example, board certifications and training than their own. The AYA program at MCC is led by a pediatric oncologist who reports directly to the chair of the Sarcoma Program, who is a surgical oncologist. MCC does not have a pediatric oncology practice and does not routinely care for patients under 15 years of age, although disease-specific expertise may be provided on a case-by-case basis, with administrative approval.MCC sees ∼16,000 new patients each year, with over 1500 of these new patients ranging from 15 to 39 years of age. This means that 100–125 unique AYA patients visit MCC each day, and 10% of inpatient beds are occupied by AYA patients. This volume prompted an administrative decision to contribute hospital resources to AYA patients, with coordinator support. Clinically, the Immersive Model began at MCC with a pediatric oncologist from All Children's Hospital providing care to sarcoma patients up to 40 years of age with select diagnoses. The program continues to collaborate with Johns Hopkins All Children's Hospital in a variety of ways, including several ongoing research collaborations and multiple physicians with clinical privileges at both facilities. Other groups, bringing broad and necessary expertise, began participating in the program (Fig. 1). MCC has grown to a multidisciplinary AYA Committee that is structured with five subcommittees that focus on: fertility, research, patient education, social events, and psychosocial issues. The entire group meets monthly in an open forum to share communication and discuss opportunities, provide updates on new and ongoing committee initiatives, and review factors that facilitate and obstruct local AYA care.FIG. 1. AYA Program Organizational Chart: The AYA program incorporates many disciplines and areas of expertise together across traditional cancer center departments. AYA, adolescent and young adult.While adult oncology care centers have clinical expertise regarding several AYA cancer types, such as cutaneous malignancies and carcinomas, it is less common for an AYA program to be established within an adult facility.9 We have found that our model has, thus far, largely addressed the common barriers encountered when AYA oncology is shared between pediatric and medical providers or with informal programs. We offer here the results of an interdepartmental discussion to identify barriers and assess our program's model in terms of addressing AYA oncology care. We report on how our immersive AYA oncology program has addressed common barriers, real and perceived, that often affect the provision of quality care for AYA patients with cancer.Barrier 1: Turf War—Medical Oncology Versus Pediatric OncologyLack of time from the medical oncologist due to overwhelming patient care responsibilities is often misperceived by pediatric oncologists as a lack of interest in young adult patients. (Medical oncologist involved in AYA program)Most clinicians familiar with AYA oncology are aware of the turf war regarding whether pediatric or medical oncologists are better suited to treat AYA patients. It is important to discuss and better understand the perceived and real differences between the disciplines regarding the approach to care, philosophies of care, and expectations of the systems in which pediatric and medical oncologists train and practice, to avoid antagonism and promote collaboration. Typical pediatric oncology programs consist of a relatively small group of physicians who maintain broad expertise in benign hematology and general oncology (Fig. 2A). The average practice will see ∼50 to 80 new oncology patients per year, with over half typically having leukemia or central nervous system malignancies. Because of a successful history of improving outcomes through multi-institutional collaborative clinical trials, care standards are relatively uniform across institutions and typically based on the most recently completed clinical trial results or on active clinical trials.10FIG. 2. Barrier 1: Turf War or Differences between Pediatric and Medical Oncology. (A) Approximate numbers of patients, staff, and clinical trial enrollments at MCC and an average pediatric oncology program. (B) Selected outcomes for all pediatric cancers and selected, advanced-stage, high-volume cancer diagnoses seem in the older population. MCC, Moffitt Cancer Center. Source: Surveillance, Epidemiology, and End Results (SEER) program (www.seer.cancer.gov). SEER*Stat Database: Incidence—SEER 18 Regs Research Data+Hurricane Katrina Impacted Louisiana Cases, Nov 2015 Sub (1973–2013 varying), National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released April 2016, based on the November 2015 submission. Stage at Presentation: DistantAcknowledging that the majority of adult patients are cared for in the community rather than Comprehensive Care Centers, we describe the structure at MCC. There is an entrepreneurial spirit endemic to Comprehensive Cancer Centers, which are likely to have adequate patient volumes and lower baseline survival rates that support single-site investigator-initiated trials, which are frequently prioritized over cooperative group trials (Fig. 2B). In terms of patient volume, medical oncologists have perpetually full schedules, often with waiting lists, in contrast to the limited number of available patients to be seen by typical pediatric oncologists. Generally, ∼7% of the average medical oncologist's 400 new patients seen annually are in the AYA age range (Fig. 2A).AYA needs may be missed or not prioritized due to the competing demands of the institution and individual physician to increase efficiency, reduce costs, and maintain patient satisfaction. This reality may be perceived by the pediatric community as a lack of understanding and compassion toward the younger population. The AYA oncology provider community knows all too well that these patients require more resources for a given diagnosis for a number of reasons, including, but not limited to, having less knowledge and experience of healthcare, less insurance coverage, and/or greater psychosocial needs. Under the current framework, with a likely worsening trend, the medical oncology community may not be properly equipped to provide the extra time and resources needed for the AYA population. We do not believe that only pediatric oncologists can or should lead AYA programs. Indeed AYA leaders have emerged from multiple disciplines not limited to physicians and thus we do not believe program development necessarily starts with a pediatric oncologist. Within an adult cancer hospital system, the AYA leader should be willing to engage interdisciplinary teams, articulate a vision, and put forth the effort to see projects from inception through completion.During the preparation of this article, nearly every physician confirmed that differences between a pediatric and medical oncologist's training and schedule volumes were a real and impactful barrier to providing care to AYA patients. Interestingly, nonclinical staff typically viewed these differences as a perceived barrier. This long-standing turf war may not be understood by the whole clinical team and failure to recognize this issue may adversely affect critical clinical decisions. Inability to effectively acknowledge the clinical cultures of pediatric and adult hospitals can hinder effective AYA program building. Shared care of patients across our institutions and venues, such as tumor boards, during which face-to-face discussions routinely occur, have been effective in creating collaborations. There is also discussion around who should be writing clinical trials geared toward improving the enrollment and outcomes of AYA patients. Currently, there are ongoing efforts, models, and trials for this target population.11,12Barrier 2: Limited Resources for an AYA ProgramIt feels like I'm back in the college dorm again instead of a hospital room. (AYA patient comment regarding the MCC-Swim Across American AYA Lounge)There are many unmet needs in the AYA population and it can be daunting to try and address all of them when developing a program. Thus, AYA programs should be built with goals that are consistent with local expertise and available funds, while aspiring to grow. Other AYA programs have focused, and then reported, on advances of a single pillar of AYA care, such as fertility,13,14 psychosocial care,15 survivorship,16 or trial enrollment.17 MCC's AYA Program was built with administrative support through institutional funds and a local philanthropist's commitment and then sustained by additional gifts, ranging from several hundred dollars to over a hundred thousand dollars (Fig. 3A). Importantly, having a single leader for the AYA effort has worked well with regard to patient and program needs, along with setting realistic goals for the use of donated funds. We also ensure timely communication to the donors regarding how the resources are being used. MCC's AYA Program's greatest expense is funding research collaborations (Table 1). These joint research projects are intended to create positive clinical change for AYA patients and have created sustained collaborations with other disease-specific clinicians at the institution.FIG. 3. Barriers 2 and 3: Needed Resources and Communication. (A) Sources of philanthropic funds for MCC AYA program. Additional details about goals of gifts and projects supported in Table 1. (B) MCC Swim Across America AYA Lounge. (C) Patient responses on preferred method of contact. Despite a majority indicating email as the preferred method, (D) opened rates of email remain suboptimal and consistent across serial emails announcing educational or social events.Table 1. Adolescent and Young Adult Research and Programmatic Progress Funded from Grants and PhilanthropySourcePeriod fundedPurpose of fundingPrograms/projects funded at MCCGonzmart Family Foundation www.richardsrunforlife.org2011 to PresentResearch, unrestricted• Sarcoma: Osteosarcoma single institution chemotherapy intensity AYA and pediatrics21• Ewing sarcoma disparities22• Sarcoma/pathology: Ewing sarcoma biomarkers23,24• Sarcoma/M2Gen (www.m2gen.com): Sarcoma endosialin expression25• HOB: Fertility decision making with meningioma26• Gastrointestinal oncology: Colorectal cancers (see Lewis Family Cancer Fund below)• HOB: Fertility27• Cutaneous: AYA trial enrollment, management of melanoma in younger patients28–31• Hematology: AYA outcomes32Swim Across America www.swimacrossamerica.org2011 to PresentAYA lounge and eventsEvents, wellness fairs, program building,9 quality improvement,2,18,33–36 current article, AYA pathway developmentTeen Cancer America www.teencanceramerica.org2016 to PresentPatient navigator position, AYA loungeAYA lounge, current article, AYA health navigator (2017–)Bay Area Advisors bayareaadvisors.org2016 to PresentResearch, restrictedSarcoma research and survivorship developmentMCC Internal Grant2015 to PresentAssess patient navigator positionHOB/supportive care: Distress and navigation—can a navigator improve upon current care?Pinellas Partners moffitt.org/give-back/join/pinellas-partners2016 to PresentResearch, unrestrictedSurvivorship development, osteosarcoma researchRos Miller Jilliansdream.org2015 to PresentPeer-to-peer supportDevelopment of peer-to-peer support for patients and caregiversLewis Family Cancer Fund www.facebook.com/LewisFamilyCancerFund2013Research, restrictedAYA colorectal cancers without microsatellite instability have different genetic changes than are found in older patients with colorectal cancer37Cure on Wheels Cureonwheels.org2014 to PresentFertility preservationDeveloped need-based financial support for male patients with Department of Social Work.AYA, adolescent and young adult; HOB, health outcomes and behavior; MCC, Moffitt Cancer Center.One particular event that was emblematic of unexpected productive collaborations with external funding sources was the opening of the Swim Across America Adolescent and Young Adult Lounge, built with insight from TCA (Fig. 3B). This physical space was specifically built for and designed by our AYA patients. While intended to improve upon patient's frustrations with inpatient admissions and to have a place between outpatient appointments or during days when needing to get away from the general hustle of a hospital, the lounge has proven to be more than a room. It allows the institution to better communicate the AYA mission. It reduces isolation and provides an organic space for in-patient young adults to meet each other. Many anecdotes of lifelong friendships starting in this space have been shared. Additionally this has provided a better space for patients and our recurring support groups, garnered media attention, and played a role in encouraging philanthropic giving to the AYA Program for additional initiatives.Barrier 3: Communication and Engagement with AYA Patients, Administration, and StaffWhile initial awareness of AYA issues was limited among MCC staff, several efforts have facilitated broader recognition and understanding of the program within the institution. AYA education is now part of clinical mandatories, provided as continuing education units at grand rounds, highlighted in new staff orientation, and easily found in hospital-wide directories and intranets. Members of the AYA Program regularly present at different department meetings and clinics. Our multidisciplinary AYA Committee is deliberately composed of at least one representative from each area of the hospital, so that there is an AYA champion who is familiar and up to date with AYA-specific initiatives and can serve as a liaison. While training of these many disciplines might be thought of as a strain on a nascent AYA program, we have found that the AYA program has instead provided opportunities for nurses to lead and learn from educational talks, and have used AYA quality improvement projects to fulfill requirements for advancement on their clinical ladders. While day-to-day accomplishments can be difficult to articulate, confirmation of the importance of the AYA program has come through special mention of the program during our recent successful Magnet designation, as well as the Cancer Center Support Grant, which both recognized the trans-departmental care teams and research the AYA Program has helped to facilitate. Furthermore, the AYA program has contributed to timely and unanticipated alignment with MCC strategic initiatives, such as providing TCA grant support for a patient navigation initiative along with identifying a pediatric oncologist to direct a growing AYA survivorship program.Technology use and preferred means of communication vary across the AYA age range. An AYA program needs to add value and be visible to patients and staff. A current barrier at MCC is the inability to create AYA-specific social media accounts. Consequently, this leaves a large gap in information sharing. While the impression is that social media platforms are AYA patients' preferred methods of communicating health information, an informal survey of patients revealed email to be the only communication method preferred by a majority of patients (Fig. 3C). Despite this preference, <15% of emails are typically even opened by our patient population. (Fig. 3D). While we continue to work to improve program communication with patients, we have long recognized the critical importance of connecting fellow AYA patients together. We have reached out through educational and social events, holiday parties, wellness fairs, and community partnerships with consistent attendance (Fig. 4C). We plan to develop a web-based peer-to-peer support application to pilot through a consortium of AYA programs and to connect AYA patients. We intend this to be used for online facilitation of support groups and to reach isolated populations such as bone marrow transplant patients, using their cell phones or other easily accessible devices.FIG. 4. Barrier 4: AYA Value. (A) An effort to bring AYA-specific aspects of care to community physician groups is our AYA magnet, which also includes referral information. (B) MCC's ongoing banking efforts have over 1000 tumor samples in AYA patients aged 18–39 and more available normal tissue samples. (C) Attendance ranges at recent events.While there are 100 AYA patients seen per day at MCC, they do not crowd the lounge nor do they interact spontaneously. Generally, they prefer to spend as little time in the hospital as possible and are focused on their treatment. A patient's sense of isolation and the clear benefit they could have from meeting other AYA patients or a caring staff member is the largest area of growth potential for the AYA program at MCC. We believe there are numerous missed opportunities to make these connections. While we have many social workers that are enthusiastic about helping AYA patients, ongoing feedback reflects that optimal use is still a concern. Themes that emerge include the medical teams only involving psychosocial teams with financial or substance abuse problems and likely missing adjustment disorders and other stressors that fall under the clinician's radars for concern, especially if not directly reported by the patient.Social work also perceives a need to train medical professionals to deal with an inherent discomfort of providing some aspects of care for AYA patients. Improved opportunities for social work to interact with the medical teams and patients at multiple points in time along the cancer journey remain a challenge. To more systematically assess new AYA patients coming to our cancer center, we have collaborated with TCA and hired a patient navigator who performs a telephone assessment before the first visit and alerts social workers in the respective clinics improving chances for an initial psychosocial assessment for all AYA patients. During initial information gathering performed at MCC in preparation for creating the AYA Patient Navigator position, we interviewed AYA patients on and off active treatment and stakeholders across the hospital. It was determined that AYA patients at different points of treatment have different pressing needs.18 Active therapy patients had unmet immediate day-to-day needs regarding reproductive health assistance, child care, coordination of appointments, feelings of guilt about taking away family and friends' time, and feelings of isolation. Off-therapy patients' expression of unmet needs focused on more global themes, including fear of recurrence, poor communication with the healthcare team, education and employment needs, and the desire to return to normal.Our medical oncologist providers treating AYAs are generally aware of reproductive health concerns if not the details of generating a referral. Another AYA-specific communication barrier frequently mentioned by our medical group includes the dynamic of adding parents to the physician–patient relationship. Identification of these needs ultimately helped generate a job description and objectives for the AYA Patient Navigator position. We were fortunate that this plan aligned with the cancer center's objectives and goals. We were also able to secure additional grant funding to evaluate this intervention and its effect on AYA patients' experience with the AYA program and overall quality of care.In the community, we aim to inform providers, patients, and healthy AYA-aged people about AYA oncology. The AYA Program works with physician liaisons and regularly communicates with the physicians who refer AYA patients. MCC's AYA program launched a simple campaign that involved highlighting the "Important Considerations in Treating Young Adults" (Fig. 4A) on a magnet, along with contact information.Barrier 4: Academic Value in AYA Programs and Research Is QuestionedOur program aims to discover and implement methods to improve care for AYA patients through research and quality improvement. While some disease-specific departments at MCC are a natural AYA fit based on their epidemiology, AYA oncology is not universally accepted at MCC. AYA oncology can be considered a nonviable academic track for promotions, with limited opportunities for high-impact factor articles. Recognizing this context from the program's inception, plans for broadening the AYA program beyond sarcoma patients have been in place. These included reaching out early and often to department chairs and interested faculty of all experience levels to share our ideas, solicit theirs, and ultimately bring resources and energy to collaborations. We have asked disease-specific AYA questions that could best be answered at out cancer center. An expected and positive aspect of these research-based collaborations has been the identification of AYA champions within other departments. Importantly, this resulting team has sustained our program and led to jointly authored publications (Table 1).Our Immersive Model creates a unique environment to tackle important clinical questions in the AYA space. We believe that a hospital with an AYA Program will provide better care for AYA patients and that the existence of such a program will entice patients to seek their care at that location. Community oncologists with a better appreciation of the unique needs of this population may be more likely to refer to a Comprehensive Cancer Center with a well-established AYA program. The best currency at MCC is a good scientific question and the resources to answer it. Therefore, our AYA program is built upon MCC's collaborative culture to create teams to answer such questions, and its goals include improving patient care through research, thereby simultaneously creating academic value (Table 1). Ideas to enhance future collaboration include organizing the AYA samples and information from a larger cancer database, the Oncology Research Information Exchange Network (oriencancer.org) (Fig. 4B).The Pillars of Care: AYA Patients Are UniqueHaving discussed how the immersive model functions at our center to address traditional barriers, we turn to "the pillars," which are essential elements in an AYA program, and discuss them within the model. AYA oncology is inherently multidisciplinary, with the pillars of care traditionally associated with AYA program goals, including psychosocial support, clinical care, clinical trials, financial counseling, fertility counseling and preservation, research, education, and survivorship. For context, the Health Care Rights Initiative previously launched a Centers of Excellence Program named Change it Back, as a way to structure AYA programs on a national scale, but it is no longer active (hcri.org/programs/change-it-back). To qualify as a Center of Excellence, each program was to contain certain key elements, to include fertility counseling, health insurance and financial counseling, clinical trial education and facilitation, psychosocial support, and transition to surveillance and survivorship services. At MCC, our AYA committee is multidisciplinary and meets on a monthly ba