Adolescent And Young Adult Oncology Research Articles

Implementing Mental Health Screening for Adolescent Hematology and Oncology Patients: A Quality Improvement Initiative.

Purpose: Adolescents and young adults (AYA) with chronic illnesses experience an increase in mental health concerns. A mental health screening (MHS) process for hematology and oncology patients was implemented in a single institution. The quality improvement project was conducted to integrate a MHS process, educate providers about the importance of mental health in this patient population, and evaluate the process. Methods: The COM-B (capability, opportunity, motivation-behavior) model for behavior change was used to inform strategic planning and Plan-Do-Study-Act (PDSA) methodologies for process improvement. Retrospective chart reviews and surveys were conducted to determine missed screening rates and providers' perceptions, knowledge, attitudes, and skills of the MHS process. Results: Of 334 eligible patient encounters, the missed screening rate was 15.0%, the overall error rate of completing the screening was 3.8%, the error rate of completing the suicide or self-harm indicator was 2.6%, and the missed medical social worker touch point was 4.8%. Conclusion: The rising rates of mental health concerns in AYA hematology and oncology patients call for streamlined MHS processes to improve the identification of patients who may need intervention and services. Processes should be tailored to workflows and available resources. Future PDSA cycles will include providing dedicated nursing education and determining the cost needed to meet the rising mental health needs of the AYA hematology and oncology population.

O10-1 A single centre experience on adolescent and young adult oncology (AYAO) patient perspectives on fertility preservation

O10-1 A single centre experience on adolescent and young adult oncology (AYAO) patient perspectives on fertility preservation

Healthy identity development in adolescent and young adult (AYA) oncology: Enhancing family communication to reduce AYAs’ identity distress.

371 Background: Identity development is the process that informs how an individual views oneself and develops a sense of self. A cancer diagnosis during adolescence and young adulthood (AYA; ages 15-39) disrupts AYAs’ identity development and creates identity distress. Identity development is a key developmental task during AYA. It is a recognized psychosocial concern and need for diagnosed AYAs but remains an understudied psychosocial need in AYA oncology care. Identity development can be promoted (or inhibited) in AYAs’ social interactions. AYAs’ communication with parents (often their primary source of support) may function adaptively or maladaptively for AYAs’ identity development. A communication skills intervention for diagnosed AYAs and parents could address communication strategies that promote AYAs’ healthy identity development while buffering identity distress. To capture knowledge that will contribute to a communication skill intervention, this study aimed to identify parent – AYA communication that promotes or inhibits identity formation. Methods: We recruited 14 AYAs to participate in audio-recorded, semi-structured, in-depth interviews. Eligibility criteria for AYAs included: 1) must be diagnosed with any type of cancer during adolescence (aged 15-18) or emerging adulthood (aged 19-29) and 2) be in active treatment or up to 32 months since the end of treatment. Interviews were thematically analyzed using constant comparative method. Results: AYAs’ age ranged from 19-29 ( M =24 years old), and their age of diagnosis ranged from 15-27 years ( M =21 years old). Diagnosed AYAs shared four types of identity disruptions that involved communication with their parents: independence, friendships, sexual orientation/behavior, and long-term goals. They also shared how parents’ communication either promoted identity development or contributed to identity distress. Results indicated that parents’ using parental psychological control in communication contributed to AYAs’ identity distress. AYAs shared parents prioritizing the AYA’s voice and engaging in emotionally supportive communication fostered their identity development. Conclusions: This study captures specific communication approaches and behaviors in parent-AYA communication and its promotion of AYAs’ identity development or contribution to identity distress. Findings demonstrate the importance of developing communication skills training and conversation tools to helps both AYAs and parents learn how to communicate to promote AYAs’ identity development and better overall psychological well-being.

Abatement of the Survival Cliff in Older Adolescents and Young Adults with Acute Lymphoblastic Leukemia and Lymphoblastic Lymphoma in the United States.

Purpose: In 2018, a "survival cliff" in the United States was identified among older adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL). This study reassessed the cliff and associated putative causes. Methods: Survival data were obtained using the U.S. Surveillance Research Program, National Cancer Institute (NCI) SEER 22 Registries. Accrual data on cancer treatment trials conducted by the NCI cooperative groups and NCI-designated cancer centers were obtained from the NCI Cancer Therapy Evaluation Program. Trend and average percent changes and statistical significances were identified with the NCI Joinpoint Regression Program. Results: A previous cliff-like decrement in the survival of 17- to 20-year-olds is no longer apparent, overall and in all racial and ethnic groups. The "survival cliff" age range was coincident with a clinical trial accrual cliff, and both diminished when more clinical trials were available to, and participated in by, young adult patients. Older AYA patients of ages 30-39 had minimal improvement in clinical trial accrual and least survival gain among the AYA age group. Conclusion: The survival cliff has abated, resulting in thousands of fewer premature deaths and tens of thousands of years of life saved-a remarkable achievement. The survival improvement may be attributed to improved clinical trial availability for and recruitment and participation of AYAs on treatment trials, application of pediatric-inspired ALL treatment regimens to AYAs, expanded national health insurance for -18 to 25 year olds, improved AYA cancer services, and a national focus on AYA oncology.

Functional outcomes of bony sarcoma (BS) in Adolescent and Young Adult Oncology (AYAO) patients-a scoping review.

Sarcomas are heterogeneous rare cancers, and while they affect 1% of all adult cancers, they affect 10-20% of adolescents and young adults (AYAs). The 5-year survival rates range between 50-60% but have remained stagnant. While the management of bony sarcomas (BS) usually involves systemic treatment and major morbid surgeries, functional outcomes and quality of life have been largely overlooked. A literature search was conducted on PubMed and ScienceDirect using key search terms of "Adolescent and young adult", "AYAO", "bone sarcoma, osteosarcoma, Ewing sarcoma", "functional outcomes" and "health-related quality of life" from 1st January 2003 to 13 March 2023. A total of 858 results in total were screened by two independent authors, and 18 selected papers were included in the scoping review. AYAs have poorer outcomes in all aspects-physical, social and psychological in BS survivorship, as many changes from disease and treatment are usually persistent and irreversible, with significant impact on mobility, function and body image. Current tools to assess health-related quality of life (HRQoL) in AYAs are not standardized or validated in this age group. Subjective tools measuring physical outcomes do not correlate to objective measures of physical function. These outcomes have a direct connection to their independence, self-confidence and future job endeavors, yet hardly any specific research has gone into it. They are stricken with a cancer diagnosis during the prime of their lives and it is essential to manage them holistically to preserve and maximize their functional outcomes. More research is required to monitor their outcomes long-term post-treatment and into survivorship.

Helping adolescents and young adults (AYA) with cancer manage identity distress: Enhancing clinician-AYA patient communication to promote identity development

ObjectiveA cancer diagnosis during adolescence and young adulthood (AYA) disrupts AYAs’ identity formation, a critical task for healthy development, and contributes to psychological distress called identity distress. Clinical communication is central to promoting AYAs’ healthy identity development. We sought to identify aspects of clinician-diagnosed AYA communication that can promote AYAs’ identity development and potentially buffer them from distress. MethodsIn-depth, semi-structured interviews were conducted with two groups (AYA oncology clinicians and diagnosed AYAs). Transcripts were thematically analyzed to capture communication that clinicians and AYAs perceive promotes AYAs’ identity development and buffers related distress. ResultsFourteen diagnosed AYAs and 7 clinicians identified three clinician- or AYA-led communication approaches and associated strategies that they perceive can buffer identity distress and promote identity development: 1) clinicians’ using person-centered communication (e.g., empathic communication); 2) promoting AYAs’ control/self-management of care (e.g., not dictating AYAs’ behavior); and 3) prioritizing/seeing the person behind the patient (e.g., knowing the AYA as a person). Conclusion/practice implicationsBoth AYA oncology clinicians and diagnosed AYAs can communicate in ways that protect AYAs’ identity development and related psychological well-being. Findings can be implemented into targeted communication skills interventions to teach health-promoting behavior and augment AYAs’ psychosocial oncology care.

Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.

Purpose: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.

Role of social determinants burden on outcomes and survival for AYAs with cancer.

1610 Background: Health care utilization and survival are correlated with social determinants of health (SDoH). Minimal data exists on the impact of SDoH within AYA Oncology. Methods: TriNetX, a de-identified healthcare research database retrospectively examined presence of SDoH billing codes among AYA cancer patients at various time points. Three cohorts were evaluated: ages <15, 15-39, >39. Cox proportional hazards regression was used to assess predictors of SDoH burden and survival in AYAs. Results: Baseline demographics were similar across cohorts. AYAs had higher baseline SDoH (25811, 5.2%) compared to <15 (3913, 2.9%) and >39 (58237, 1.8%). After diagnosis, AYAs had greater incidence of SDoH burden at 1y (OR 1.86 vs <15, 2.71 vs >39), 3y (OR 1.79 vs <15, 2.63 vs >39), and 5y (OR 1.8 vs <15, 2.5 vs >39). AYAs with any SDoH had higher occurrences of ED (OR 2.51) and ICU visits (OR 1.94). Within AYAs, baseline SDoH code was most prevalent in 30-39 age group, males, Hawaiian/Pacific Islanders, and lung cancers. The most common SDoH code in AYAs at diagnosis was homelessness at 57.8%. In a multivariate analysis examining incidence of SDoH in AYAs, positive associations were age 30-39; 1.95 (1.61-2.37), males; 1.49 (1.36-1.63), American Indian/Alaska Native; 4.44 (3.12-6.31), and presence of SDoH at diagnosis; 83.0 (71.6-96.3). Mortality in AYAs was associated with age 30-39; 1.81 (1.72-1.91), males; 1.58 (1.54-1.63), unknown race; 1.53 (1.48-1.58), and CNS tumors; 1.15 (1.06-1.25). Conclusions: AYAs with cancer have a high prevalence of SDoH burden at diagnosis and acquired. Within AYAs, age 30-39, males, and minority populations were most likely to acquire a SDoH code and have worse survival. The strongest association with both incidence of SDoH burden and mortality was a SDoH code at diagnosis. [Table: see text]

Adapting an Adolescent and Young Adult Program Housed in a Quaternary Cancer Centre to a Regional Cancer Centre: Creating Equitable Access to Developmentally Tailored Support.

Adolescents and young adults (AYAs) with cancer, representing those between 15 and 39 years of age, face distinctive challenges balancing their life stage with the physical, emotional, and social impacts of a cancer diagnosis. These challenges include fertility concerns, disruptions to educational and occupational pursuits, issues related to body image and sexual health, and the need for age-appropriate psychosocial support within their communities. The Princess Margaret Cancer Centre (PM), a quaternary care center, established a specialized AYA program in 2014, offering holistic and developmentally tailored psychosocial support and currently, efforts are underway to expand this to other regions in the province to address the need for equitable access. The establishment process involves securing funding, conducting an environmental scan, identifying service gaps, developing clinical pathways, and implementing AYA supportive care. An accessible AYA program should also consider social determinants of health, social location, intersectionality, and an interdisciplinary health approach in understanding health inequities in AYA oncology care. This paper describes the processes implemented and challenges faced in creating a community-based AYA program beyond major resource-rich cities and efforts to address intersectionality.

Provider perspectives and recommendations on standardized sexual function screening intervention in adolescent/young adult oncology patients.

Sexual function (SF) concerns are common among adolescent and young adult (AYA) cancer survivors, are underrecognized and undertreated. This study sought AYA oncology provider input on the implementation of an SF screening tool to address this unmet need. Semi-structured interviews were completed with oncology providers (n=25) who care for AYAs at a single institution. Interviews sought to understand barriers to addressing SF, elicit perspectives on use of an established screening tool, and obtain recommendations for SF screening intervention development and implementation. Interviews were developed using the Consolidated Framework for Implementation Research (CFIR); thematic analysis-guided interpretation. AYA oncology providers were in favor of using an SF screening tool, but confirmed previously identified barriers and implementation considerations within multiple CFIR domains, including concerns about privacy, patient comfort, provider buy-in, provider knowledge, resource needs, and workflow/capacity constraints. They identified numerous strategies to address barriers through screening intervention design and implementation approaches. For example, provider buy-in could be optimized through education, availability of clinical resources, creation of a dedicated sexual healthcare team, provider engagement in intervention development, and leadership involvement. Development and implementation of an effective SF screening intervention is necessary to improve diagnosis and treatment of sexual dysfunction, with the ultimate goal of improving sexual health-related quality of life in AYA cancer survivors. AYA oncology providers identified numerous intervention and implementation design strategies for the development and implementation of an SF screening intervention, which must be integrated with patient recommendations.

Fostering resilience in adolescence and young adulthood: Considerations for evidence-based, patient-centered oncology care.

Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly.

Developing a Reproductive Health Survivorship Care Plan (SCP-R) for Female Adolescent and Young Adult Leukemia and Lymphoma Survivors

In the United States nearly 250,000 female adolescent and young adult survivors of leukemia and lymphoma (AYA survivors) face increased reproductive health risks that vary by cancer treatment exposure. Adverse reproductive health late effects include infertility, spontaneous abortion, preterm birth, and, more rarely, cardiopulmonary risks impacting pregnancy. AYA survivors have significant concerns, misperception of reproductive risks and unmet information needs about their reproductive health. Reproductive concerns range from worry about infertility to pregnancy and offspring health concerns and are associated with depression and poorer quality of life. These concerns can be mitigated through improving health literacy and implementation of screening and management strategies. However, there is a gap in knowledge on how to deliver reproductive risk information and management strategies effectively and efficiently, to a diverse patient population. The overarching objective of this project was to develop a Reproductive Health Survivorship Care Plan (SCP-R) for female AYA survivors of leukemia and lymphoma as a potential strategy to improve reproductive health knowledge and care. Our team of researchers and healthcare providers in AYA oncology, obstetrics and gynecology, and childhood cancer survivorship completed systematic reviews of infertility risks, contraception practices, pregnancy-related complications and offspring health in AYA female cancer survivors. We then categorized the impact of treatment exposures on infertility and pregnancy/offspring health outcomes as “no increase in risk”, “low risk”, “moderate risk” or “high risk” and developed a SCP-R prototype describing an individual's infertility, pregnancy and offspring risks including clinical guidelines on screening and managing infertility, contraception and pregnancy health. In addition to communicating an individual's reproductive health risk, the SCP-R included guides for survivors towards the next steps in improving their reproductive knowledge and care and supported these steps with best evidence-based guidelines. The SCP-R content was reviewed in 4 focus groups by 18 young adult female leukemia and lymphoma survivors, who advised on graphical representation and endorsed relevance, appropriateness, and acceptability. Relevant feedback provided during focus group sessions was incorporated into the current version of the SCP-R. All focus group participants reported a need for reproductive health information and felt that prior resources provided to them regarding reproductive-health related information was not sufficient. Reproductive health care (i.e. fertility, family planning and preconception counseling) deploys appropriate screening and management strategies; evidence-based practices recommended by clinical oncology and reproductive medicine societies. Despite longstanding guidelines supporting reproductive health care in AYA survivors, many fail to receive this type of care. The SCP-R may reduce reproductive risk misperception among AYA survivors and serve as an essential first step towards appropriate reproductive health care, and eventually lead to improved survivor's quality of life. The SCP-R impact on reproductive health knowledge and reproductive health seeking behavior among AYA leukemia and lymphoma survivors warrants further evaluation.

Fertility Preservation in Adolescents and Young Adults With Cancer: A Case-Based Review.

Adolescent and young adult (AYA) oncology patients are unique in many aspects of their care; fertility preservation (FP) is one of the most complex to address. In addition to the newly diagnosed AYA patient, there are growing numbers of AYA survivors of childhood cancer who present with concerns about their fertility. Emerging independence, emotional and intellectual growth, and development of an adult mindset are hallmarks of the AYA population; these transitions heighten the intrinsic medical, social, and financial challenges of a cancer diagnosis. FP is extraordinarily important in AYA oncology and can be addressed in many ways: experimental options as well as standard of care, with key differences on the basis of pubertal development, cancer diagnosis, and urgency of cancer-directed therapy. Options exist both at diagnosis and throughout the survivorship journey. It is imperative that oncologists recognize the challenges in this age group, as well as opportunities to pursue FP. The field has evolved significantly in the past 25 years and will continue to evolve as we incorporate more immune-based and targeted therapies into our treatment regimens. This case-based review will explore opportunities to preserve fertility in this unique patient population.

Palliative Care in Adolescents and Young Adults With Cancer.

Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.

Utilization of Teleconsent for Adolescent and Young Adult Cancer Clinical Trials, a Report from the Children's Oncology Group.

Purpose: Adolescents and young adults (AYAs, ages 15-39 years) are underrepresented in oncology clinical trials. Reasons for this include accessibility of the trial and whether the trial is presented to AYAs. The coronavirus disease 2019 (COVID-19) pandemic not only amplified these enrollment challenges but also presented opportunities for improving the enrollment process through virtual methods such as electronic informed consent and teleconsent. While AYAs are well positioned to take advantage of these opportunities, the extent to which institutions utilize remote enrollment processes is unclear. The goal of this study was to identify the utilization of and barriers to using teleconsent for AYA oncology clinical trials. Methods: The Children's Oncology Group (COG) AYA Responsible Investigator (RI) Network Teleconsent Working Group sought to understand teleconsent utilization both before and during the pandemic. The working group developed an online survey distributed via email to COG AYA RI Network members (n = 197). Results: The survey received 49 responses (25%) from 40 different institutions. Before the pandemic, 13% of respondents reported that their institution allowed study enrollment via teleconsent. After the pandemic, 23% reported using teleconsent for clinical trial enrollment and 38% reported changes in institutional Review Board policies and procedures allowing teleconsent. Respondents reported that the greatest benefit of teleconsent was patient convenience and the greatest barrier was institutional restrictions on teleconsent utilization. Respondents reported that sharing institutional guidelines would be the most helpful intervention to improve teleconsent adoption. Conclusion: Teleconsent is a promising but underutilized approach. Institutions should work together to address common challenges to accessibility and acceptance of clinical trials by AYA cancer patients.

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

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.

Children's Oncology Group 2023 blueprint for research: Adolescent and young adult oncology.

Over the past few decades, 5-year cancer survival has steadily improved for all adolescents and young adults (AYA, 15-39years at diagnosis) combined. While encouraging, this progress simultaneously highlights a compelling need for improving survival in higher risk AYA subsets and for addressing health outcomes and health-related quality of life (HRQoL) among long-term survivors. The Children's Oncology Group (COG), in collaboration with the National Cancer Institute (NCI) and the adult network groups within the NCI National Clinical Trials Network (NCTN), has developed a large and growing portfolio of therapeutic AYA cancer clinical trials to identify optimal treatment approaches for common AYA cancers. Additional initiatives, led by the COG AYA Oncology Discipline Committee for increasing collaboration between the COG and the adult network groups, optimizing AYA clinical trial enrollment, and standardizing the assessment of HRQoL, have been highly successful to date. Further, NCTN-wide collaborations are currently underway focused on improving survival for AYA malignancies with poor prognosis and, through development of supportive care and care delivery trials, reducing the short- and long-term toxicity caused by cancer treatment. Leveraging the research infrastructure within the NCTN and the NCI Community Oncology Research Program, the COG will continue to champion meaningful advancements in health and survival for AYAs with cancer.

Growing wiser with age: Results from the ACCELERATE Fostering Age Inclusive Research Group clinical trial survey.

e13596 Background: Adolescent and Young Adult (AYA) cancer patients are disproportionately excluded from clinical trials because of trial age limits that prevent access across the paediatric and adult oncology divide. Working under ACCELERATE, the international collaborative working to improve paediatric cancer drug design and regulation, the Fostering Age Inclusive Research (FAIR) group's aim is to reduce this inequality in access. Here, we report an international survey of AYA oncology professionals, and identify key barriers to age-inclusive participation in clinical trials. Methods: An online survey was created by ACCELERATE-FAIR trials working group members, and subsequently distributed to academic and industry professionals involved in AYA oncology through international networks including the ACCELERATE multi-stakeholder platform, ITCC, and cancer-specific research groups. Demographic factors were recorded, and participants were asked to consider whether listed potential barriers to AYA inclusion are ‘thought’ (presumed/expected) or ‘real’ in practice. Responses were recorded using in-built survey software. Results: The 124 respondents were from Europe (75%), America (22%; North America, Brazil), Algeria, India and Australia. 66 respondents (53%) had participated in opening an ‘adult’ phase I/II which permitted inclusion of adolescents ( < 18 years old), and 63 (51%) had opened a ‘paediatric’ phase I/II trial that included adult cancer patients. Key ‘thought’ barriers to AYA inclusion in early phase (I/II) adult oncology trials largely mirrored ‘real’ barriers, such as “Limited incidence of the disease in adolescents (ages 12 to 17)” and “Trials approved in certain institutions or countries only for 18 years old and above”. A key ‘real’ barrier to the inclusion of AYA patients was “Reluctance from medical oncologists”, identified by 21 responders. Important disparities in the ‘thought’ and ‘real’ barriers to AYA enrolment were also highlighted; “No appropriate adult oncology network” was identified by 2 respondents as a ‘thought’ barrier, and by 13 as a ‘real’ barrier. Importantly, only 35% of respondents were aware of the FDA’s guidance on the inclusion of 12-17 year old patients in adult early-phase trials. Conclusions: This international drug development multi-stakeholder survey highlighted key barriers to clinical trial access in AYA oncology. Whilst more than half of respondents reported being involved in trials which were AYA inclusive, there were clear disparities in understanding the ‘thought’ and ‘real’ barriers to trial entry. Key issues included a lack of medical oncologists responding to this survey. Whilst the issues surrounding AYA inclusion in clinical trials remain, we illustrate key goals for future improvement such as improving understanding around FDA guidance in this area and collaborating further with medical oncologists.

Improving multidisciplinary patient-centered care for adolescents and young adults with cancer.

e13503 Background: Approximately 90,000 adolescents and young adults (AYA) are diagnosed with cancer annually. Poor outcomes are associated with decreased access to specialized care, limited opportunities for clinical trial participation, treatment protocol variations, and limited psychosocial resources. Fortunately, there has been an increased awareness of the unique challenges faced by AYA patients with the establishment of AYA programs around the world. In order to maximize management opportunities for this marginalized population, our academic healthcare system embarked to establish an effective AYA Oncology Program to serve within the continuum of Pediatric and Medical Oncology and survivorship. Herein, we report the outcomes from this important quality improvement initiative. Methods: In May 2018, the AYA program was established within Pediatric Oncology. We were able to hire a dedicated social worker in March 2020. At this time, growth of the program was limited due to the COVID pandemic. In January 2021, the consult order was updated to enhance tracking metrics. We aimed to increase AYA program consult orders by 20% from 2021 to 2022. In June 2021, we presented the AYA program to Medical Oncology and Malignant Hematology to increase program awareness. We implemented several other educational activities with the Department of Pediatrics, Department of Medicine (including Medical Oncology and Malignant Hematology), and the community via multiple Plan-Do-Study-Act (PDSA) cycles. Results: Since 2020, the AYA program has tracked 91 answered consults – 86 in the last 2 years. In 2022, there were 50 total consults placed compared to 36 in 2021, a 38.9% increase. Since 2021, the AYA program was consulted on 17.2% of newly diagnosed AYA patients. Inpatient consults were more common at 62.6%. Thirteen total consults were ordered for patients ≥30yo, of which only 2 were for patients older than 32. The AYA program was consulted on only 3.5% of newly diagnosed adults ≥30yo compared to 28.7% for the younger AYA patients. Upon surveying medical oncologists at our institution, most providers simply forget to order consults to the AYA program. Conclusions: Total AYA program consult numbers are increasing, however, there is opportunity for growth, especially in reaching the older AYA patients. Our healthcare system has recently approved the establishment of a Best Practice Advisory (BPA) in our electronic medical record to remind providers to order AYA program consults, if appropriate. Once the BPA is established, subsequent PDSA cycles will emphasize reaching older AYA patients by re-circulating educational resources and activities to providers and social workers in Medical Oncology and Malignant Hematology. Future objectives will evaluate outcomes in quality of life, overall survival, healthcare utilization, and clinical trial enrollment amongst other metrics.