Adolescent And Young Adult Cancer Patients Research Articles

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

Employment outcomes of adolescent and young adult (AYA) cancer survivors and their partners: A Dutch population-based study.

The aim of this population-based registry study was to examine the impact of cancer on employment outcomes in adolescent and young adult (AYA) survivors and their partners and associated sociodemographic and clinical characteristics. A total of 2456 AYA cancer patients, diagnosed in 2013 and aged 18 through 39years old, were selected from the Netherlands Cancer Registry and linked to employment data from Statistics Netherlands, from which 1252 partners of AYAs could be identified. For both patients and their partners, a control group with same age, migration background, and sex was selected. The impact (i.e., causal effect) was estimated by implementing a doubly robust difference-in-differences method, from 3years before to 5years after cancer diagnosis. Patients suffered a reduced employment probability (3.8 percentage points) and number of hours worked when employed (3.8%). This effect was larger for females, and individuals with a migration background, high tumor stage, or diagnosed with a central nervous system tumor/hematologic malignancy. In regard to employment, no significant effect could be found for the patients' partners, although a 5.5 percentage-point increase in employment probability was found in partners who were either unemployed or worked fewer than 400hours. A cancer diagnosis significantly affects employment outcomes of AYA patients with cancer. Patients at risk should have access to services such as job counseling to help them return into society in the best possible way. No objective impact on partners' employment outcomes was found; however, subjective well-being was not taken into account. This study estimated the causal effect of a cancer diagnosis on employment outcomes. Adolescent and young adult cancer survivors face a reduction in both employment probability and the number of hours worked when employed. Partners that were unemployed or worked the least number of hours a year before diagnosis had a 5.5 percentage-point increased employment probability, but for other partners effects are small.

Mental Health Service Contact Following Cancer Diagnosis and Associations with Cancer Mortality: Results from a Linked Population-Based Study of Adolescents and Young Adults in New South Wales.

Purpose: To assess the mental health conditions, as indicated by mental health service contact in adolescents and young adults (AYAs) diagnosed with cancer in New South Wales (NSW) and associations with cancer mortality. Methods: In 3998 NSW AYAs diagnosed with cancer in 2005-2017, mental health service contacts were obtained from hospital inpatient records and specified medical and pharmaceutical insurance claims. Odds of postcancer mental health contact were assessed by precancer mental contacts using logistic regression adjusted for sociodemographic and cancer characteristics. The risk of cancer-specific mortality related to postcancer mental health contacts was estimated using competing risk regression. Results: The prevalence of mental health service contacts in the 5 years postcancer diagnosis was 27.0%, higher than the corresponding precancer prevalence of 21.4%. The most common mental health conditions were depression and anxiety. The odds of having a mental health contact postcancer diagnosis were higher in patients with a precancer mental health service contact (adjusted odds ratio 5.69, confidence intervals [95% CIs]: 4.90-6.75). The 5-year cancer-specific survival was 87.9% (95% CI: 85.8-89.8) for patients with a mental health service contact postcancer, which was lower than the 93.9% (95% CI: 93.0-94.7) for patients without this contact. The subhazard ratio (SHR) for cancer mortality in patients having mental health service contact postcancer diagnosis was 1.67 (95% CI: 1.29-2.15), adjusted for sociodemographic characteristics, cancer stage, and precancer mental health status. Conclusion: The prevalence of mental health service contact increased after a cancer diagnosis. Mental health care should be a continued priority for AYA cancer patients, particularly for high-risk groups.

The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

This paper examines the use of digital social platforms to enhance the engagement of adolescent and young adult (AYA) cancer patients in research. Among AYAs, digital social networks have emerged as valuable resources for connection, information exchange, and emotional support. Patient engagement, encompassing participation and empowerment, is a critical aspect of AYA oncological research, yet there is a lack of scholarship dissecting the manifestation of these concepts in relation to digital social platforms. This study aims to bridge this gap by employing the frameworks of participatory culture and data ethics to analyze the impact of digital social platforms on patient engagement in research. Semi-structured qualitative interviews were conducted with eight experts from AYA patient organizations to gather insights on this topic. The findings reveal the potential of digital social platforms in fostering peer support, improving patient awareness and collaboration, increasing research enrollment, and diversifying data collection with user-generated content. However, challenges related to communication, privacy, and ethical considerations such as diversity and inclusion were also identified. The study contributes to the understanding of patient engagement among AYA cancer patients in the digital age and the development of effective strategies to encourage and highlight the voices of this patient population.

Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP).

A minority of adolescent and young adult cancer patients (AYA) live with an uncertain or poor prognosis (UPCP). Caring for a young, advanced cancer patient can lead to caregiver burden. This study aims to provide insight into burden on informal caregivers of AYA cancer patients with UPCP. In-depth, semistructured interviews were conducted with parents (n = 12), siblings (n = 7), friends (n = 7), and partners (n = 13). Thematic analysis was performed to derive themes from the data. Participants reported sleeping problems and stress. They struggle with uncertainty, fear, loss, and negative emotions. Family life is altered due to solely taking care of the children, but also the AYA. Contact with friends and family is changed. The relationship to the AYA can shift positively (e.g., becoming closer) or negatively (e.g., more conflict or no longer being attracted). Participants were under pressure, having to take on many responsibilities and multiple roles. In the financial domain, they report less income and often must continue working. A high amount of caregiver burden is experienced among informal caregivers of AYAs with UPCP. Yet only part of the impact appears to be age specific. Specific, age-adjusted interventions can be developed to lower the burden.

Risk of Therapy-Related Acute Myeloid Leukemia (t-AML) in Adolescent and Young Adults Cancer Patients Treated with Chemotherapy with or without Radiotherapy: A National Population-Based Cohort Study Using SEER Registry

INTRODUCTION The risk of treatment-related acute myeloid leukemia (t-AML) in adolescents and young adults (AYA) with first cancers treated with chemotherapy with or without radiation is not well characterized. We analyzed Surveillance, Epidemiology and End Result (SEER) data for the past 45-years (1975-2020) to identify the overall risk of t-AML in treated AYA cancer patients (pts) and by index cancer sites as well as latency periods. METHOD We analyzed NCI's SEER-8 registries. ICD-O-3/WHO-2008 codes were used to identify pts with index cancer types between the ages of 15-39 years (AYA), treated with either chemotherapy or radiotherapy, and with a subsequent diagnosis of acute myeloid leukemia (AML) at least one year after index cancer, between January 1975 and December 2020. The risk of t-AML was estimated by standardized incidence ratio (SIR), defined as the ratio of observed t-AML-cases in the AYA-with-cancer, to the expected number of AML-cases in the matched general US population. A reference rate file for AML incidence in age, gender, race and calendar-year matched US population is available in SEERStat software. A Poisson distribution of observed t-AML was assumed for the calculation of 95% confidence intervals (CIs). A P-value <.05 was considered statistically significant. We stratified the risk of t-AML for index cancer types with ten or more pts, by attained-calendar-years, and latency at multiple time intervals (Table-1) from index cancer diagnosis. RESULT Among 102,879 AYA cancer pts eligible for analysis, 236 pts developed t-AML with SIR of 6.19 (95%CI: 5.43-7.04, P <.05) with excess risk of 1.46 per-10000 person-years (pyrs). (Table-1). We stratified risk for index cancer types with at least ten patients developing t-AML, these included breast, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), testicular, thyroid, bone and joint, and soft tissue including heart. As a general trend, risk of t-AML was highest during 1-3 years after index cancer diagnosis compared to subsequent latency periods. However, risk for t-AML was significantly greater than the matched-general US population even after 20-40 years of breast cancer, HL, and NHL (Table-1). When stratified by attained calendar-year periods (1975-1985, 1986-1995, 1996-2005, 2006-2015, 2016-2020), risk for t-AML was higher than general population in all time periods. However, overall SIR was comparatively lower for recent time periods, particularly lowest during 2016-2020 [SIR: 3.49 (2.51-4.72, P <.05)]. Notably, the highest risk for t-AML in 2016-2020 was observed with index cancer of soft tissue including heart [SIR: 10.12 (1.23-36.57), P <.05]. CONCLUSION In this study spanning between 1975-2020, we observed the risk of t-AML trending down among AYA in recent years, albeit higher than the age matched general population. The risk of t-AML remained significantly elevated even after 20-40 from diagnosis of breast cancer, HL and NHL. Since these pts likely received radiation and older (higher intensity) chemotherapy based-regimens, it is essential to analyze the long-term impact of newer therapies for these cancers and assess the risk of t-AML in future studies.

Development of the Together - Teens&20s microsite, an online resource for adolescent and young adult cancer patients

ObjectivesThe purpose of this study was to explore the information needs and preferences of adolescent and young adult (AYA) cancer patients to guide next steps for development of a new online resource for this audience. The goals were to understand information needs, prioritize topic areas, and inform website design and functionality. MethodsParticipants were AYA cancer patients ages 13–25 years. We used multiple methods in two phases to gather audience feedback. The first phase collected quantitative data in an electronic survey (n = 45) about AYA patients' internet use and content preferences. The second phase collected qualitative data through focus groups (n = 13) about user preferences for content design and website function. ResultsSurvey results showed AYA patients were more interested in content about how treatments would impact their lives rather than the treatments themselves. They preferred content on school, careers, relationships, independence, side effects, and fertility. The focus groups indicated AYA patients prefer a clean, stylish design; infographics and visual aids; and the ability to find information quickly and control the amount they read. ConclusionsOnline resources represent an important opportunity to advance cancer education for AYA patients. However, it is important to consider the information needs and preferences of this audience in content design and delivery. InnovationPractitioners should use stakeholder input to guide the creation of patient education resources that are age- and audience-appropriate. This study provides insights into AYA information needs and preferences in pediatric oncology.

Strategies for recruitment and retention of adolescent and young adult cancer patients in research studies.

We conducted a literature review to identify commonly used recruitment and retention strategies in research among adolescent and young adult (AYA) cancer survivors 15-39 years of age and examine the effectiveness of these strategies based on the reported recruitment and retention rates. We identified 18 publications published after 2010, including 14 articles describing recruitment strategies and four articles discussing retention strategies and addressing reasons for AYA cancer patients dropping out of the studies. In terms of recruitment, Internet and social networking strategies were used most frequently and resulted in higher participation rates of AYA cancer survivors compared to other conventional methods, such as hospital-based outreach, mailings, and phone calls. In terms of retention, investigators used monetary incentives in all four studies and regular emails in two studies. There was no association between the number of strategies employed and the overall recruitment (p = 0.09) and retention rates (p = 0.33). Future research and planned studies testing recruitment and retention strategies are needed to identify optimal, modern communication procedures to increase AYA participation and adherence. More education should be provided to AYAs to increase their knowledge of research studies and strengthen the connection between AYA cancer survivors and their health providers.

Adolescents and young adults with oncohematological disease: use of social networks, impact of SARS-COV-2, and psychosocial well-being.

Adolescents and young adults (AYA) with oncohematological diseases could have important psychosocial difficulties that could be worsened by the effects of the COVID19 pandemic. At this developmental stage, it is also important to assess the use of social networks (SNs). This study aims to investigate the type of social network use and the consequences of the COVID19 period. These patients are compared with matched healthy peers. After the informant consent signature, the adolescents completed a series of self-report questionnaires on the use of SNs, on communication preferences, on social anxiety and on Covid19 impact through the online platform of LimeSurvey. Most of the adolescents belonged to the 18-20 age group (42.5%), were female (62%) and mainly off therapy (72%). Adolescents spent more than 2 h/day on Instagram and 1 h and half on Whatsapp, while Tik Tok use was on average 1 h/day, especially used by younger patients (r = -0.33, p = 0.023). Males used Twitch (t45 = -2.06, p = 0.05) and Youtube (t45 = -2.18, p = 0.03) for longer than females. AYA in therapy used more Tik Tok (U = 137.50; p = 0.03), Ask/Tellonym (U = 172.50; p = 0.05) and Twitch (U = 144; p = 0.017) than those off therapy. Healthy AYA showed lower levels of exposure (Z = -4.17; p = 0.00001) and impact (Z = -5.12; p = 0.00001) to Covid19, while the level of social anxiety is comparable and is in the normal range in both groups. Some clinical considerations and suggestions could be given based on these empirical results to health professionals in the care of AYA cancer patients.

Early skeletal muscle loss in adolescent and young adult cancer patients treated with anthracycline chemotherapy.

Early skeletal muscle loss has been observed in adolescent and young adult (AYA) sarcoma patients undergoing treatment. Identification of individuals within the AYA populace that are at greatest risk of anthracycline-induced skeletal muscle loss is unknown. Moreover, investigations which seek out underlying causes of skeletal muscle degradation during chemotherapy are critical for understanding, preventing, and reducing chronic health conditions associated with poor skeletal muscle status. Computed tomography (CT) scans were used to investigate changes in skeletal muscle of 153 AYA sarcoma and Hodgkin lymphoma patients at thoracic vertebra 4 after anthracycline treatment. Images were examined at three time points during the first year of treatment. In parallel, we used translational juvenile mouse models to assess the impact of doxorubicin (DOX) in the soleus and gastrocnemius on muscle wasting. Significant reductions in total skeletal muscle index and density were seen after chemotherapy in AYA cancer patients (p < 0.01 & p = 0.04, respectively). The severity of skeletal muscle loss varied by subgroup (i.e., cancer type, sex, and treatment). Murine models demonstrated a reduction in skeletal muscle fiber cross-sectional area, increased apoptosis and collagen volume for both the soleus and gastrocnemius after DOX treatment (all p < 0.05). After DOX, hindlimb skeletal muscle blood flow was significantly reduced (p < 0.01). Significant skeletal muscle loss is experienced early during treatment in AYA cancer patients. Reductions in skeletal muscle blood flow may be a key contributing factor to anthracycline doxorubicin induced skeletal muscle loss.

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Body image disturbances in adolescent and young adult cancer patients confronting infertility risk and fertility preservation decisions

Purpose Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. Methods AYA cancer patients (n = 27) aged 12–25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. Results Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. Conclusions AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs.

AYAs with cancer (aged 15 to 39 at primary diagnosis) form a specific group within oncology, and there is limited information on the impact on their informal caregivers. This scoping review aimed to gain insight into the burden on caregivers of AYAs with cancer and identify the unmet needs they might have. Eligible articles focused on impacts in one of the domains of caregiver burden (physical, psychological, social, on schedule, financial) or unmet needs. In all domains of caregiver burden, impact was reported by caregivers. Caregiving leads to physical problems (such as sleep problems) and psychological symptoms (e.g., depression, anxiety, and negative emotions). Loneliness is reported, and little peer-support. Many different tasks and roles must be undertaken, which is perceived as challenging. In addition, there is a financial impact and there are unmet needs to be met. Several domains of the lives of caregivers of AYA cancer patients are negatively affected by the disease. Some of these are age-specific, and tailored to a particular group of caregivers (parents, partners, or friends). AYA cancer patients represent a wide age range, resulting in the engagement of many different caregivers. Future research will need to take this into account in order to adequately provide support.

The Growing Burden of Cancer in Adolescent and Young Adults in Asia: A Call to Action.

Recent estimates suggest that the lower middle income countries in Asia carry the heaviest burden of cancer among adolescents and young adults (AYAs) (defined as age 15-39 years). A larger proportion of the population in Asia is aged 15-39 compared with the developed countries. This age group is different from the pediatric or the adult group in terms of physical, social, psychological, and financial needs. Cancer incidence, disability, survivorship needs, financial toxicity, psychosocial issues, and so on are underestimated in this group, and available literature is scarce. Global data show an increasing trend of adult-onset cancers such as colorectal, breast, pancreas, and lung in the AYA population. Data suggest that the disease biology and prognosis are different in this group; however, further research is needed. An ESMO/SIOPE/SIOP Asia survey on the care of AYA cancer patients in Asia found a suboptimal availability of AYA specialized centers in the region and identified several unmet needs including lack of training, clinical trials, and high rates of treatment abandonment. There is an urgent need for cancer care systems in Asia to develop specialized services to be able to cater to this growing burden. Training and research in this area also need to be upscaled with the goal of establishing a sustainable infrastructure and quality services to ensure that this vulnerable group receives appropriate care. Management guidelines and national health policies should consider giving special attention to this group as the World Health Assembly reinforces the inclusion of children and adolescents in cancer control programs.

OUTC-08. IMPLEMENTING SOCIAL DETERMINANT OF HEALTH DATA COLLECTION FOR PEDIATRIC, ADOLESCENT AND YOUNG ADULT NEURO-ONCOLOGY PATIENTS IN THE CLINICAL TRIAL CONSORTIA SETTING: PROGRESS AND CHALLENGES

Abstract Adverse social determinants of health (SDoH) are associated with decreased survival and increased long-term complications amongst pediatric and adolescent and young adult (AYA) neuro-oncology patients. These outcome disparities are in part due to inferior access to clinical trials and comprehensive, multidisciplinary care. SDoH including food insecurity, housing instability, inability to pay for utilities, and personal safety issues have been shown to negatively impact therapy adherence and exacerbate survival disparities. As such, efforts to improve health equity must include evaluating and addressing SDoH at diagnosis. Existing literature has been limited by a reliance on proxy measures of adverse SDOH such as neighborhood or census area-level socioeconomic status data, which poorly reflect individual circumstances. There is a complex interplay between neighborhood and personal socioeconomic status that has not been extensively studied and is poorly understood. In addition, socioeconomic status is only one component of SDoH. No validated tool currently exists to assess SDoH amongst pediatric and AYA cancer patients. It is imperative that multicenter clinical trials collect SDoH data to inform both trial design and interpretation of results. These data will be important to understanding and identifying patterns in tumor and toxicity incidence, as well as understanding the burden on families in adhering to trial therapies. Based on our previous work, we will present the importance of incorporating SDoH data collection within the clinical trial consortia setting. In addition, we will review the development of a comprehensive SDoH questionnaire and discuss facilitators and barriers to the incorporation of SDoH questionnaires into multicenter clinical trials and offer solutions based on our experience.

Financial outcomes of adolescent and young adult cancer survivors: a longitudinal population-based registry study.

The patterns and determinants of long-term income among adolescent and young adult (AYA) cancer survivors, and the differences compared with peers, have not yet been fully explored. This study investigated the long-term effects of cancer on the income of AYA cancer survivors. The Netherlands Cancer Registry identified all AYA cancer patients (aged 18-39 years) diagnosed in 2013 and alive 5 years postdiagnosis. Clinical data of the selected AYA patients were linked to individual, administrative real-world labor market data of Statistics Netherlands. The control group consisted of a random sample of individuals of the same age, sex, and migration background without cancer. Data on 2434 AYA cancer patients and 9736 controls were collected annually from 2011 until 2019. Changes in income level were measured and compared with the control group using difference-in-difference regression models. AYA cancer survivors experience, on average, an 8.5% decrease in annual earnings, relative to the control population. The effects are statistically significant and permanent (P < .01). Younger AYAs (those aged 18-25 years 15.5% income reduction), married cancer survivors (12.3%), females (11.6%), those diagnosed with stage IV disease (38.1%), and central nervous system (15.7%) cancer patients experienced the largest decline in income, on average, relative to controls, all else constant. Although dependent on the sociodemographic and clinical characteristics, a cancer diagnosis at AYA age has significant implications on the income of cancer patients. Awareness of vulnerable groups and the development of policies to mitigate the financial impact of cancer are critical.

Social determinants of health burden among adolescent and young adult cancer patients and impact on overall survival.

12017 Background: The 5-year survival rates for adolescents and young adults (AYA) with cancer have steadily improved, yet disparities by race/ethnicity persist. The drivers of these disparities remain unclear. Neighborhood socioeconomic deprivation has been linked to adverse health outcomes independent of the effects of individual-level measures of social determinants of health (SDOH). We evaluated the impact of neighborhood SDOH on overall survival (OS) in a diverse AYA cancer patient population treated in a single academic setting. Methods: This study utilized a multi-ethnic cohort of AYA cancer survivors (N=10,261) diagnosed between ages 15-39 seen at MD Anderson Cancer Center between 2000 and 2016. Patient demographics, zip code at presentation, cancer characteristics, and follow-up were obtained from our institutional tumor registry. Zip codes were linked to Area Deprivation Index (ADI) values, a validated neighborhood-level SDOH measure, with higher ADI representing worse SDOH. Results: The cohort included 6,361 (62%) non-Hispanic White, 1,112 (10.8%) non-Hispanic Black, and 2,133 (20.8%) Hispanic AYA cancer patients, with 655 (6.4%) of other ethnicities or missing information. The mean ADI value was significantly higher (p&lt;0.05) for Black (61.7) and Hispanic (65.3) patients, compared to White (51.2) patients. Analysis of ADI by cancer type showed significant differences, mainly driven by the significantly higher ADI in patients with cervical cancer (62.3) than other cancer types. In contrast, AYA patients diagnosed with breast cancer (53.0) and CNS tumors (52.9) resided in neighborhoods with the lowest ADI values. ADI was a significant predictor of OS overall. In multivariable models that included gender, age at diagnosis, cancer diagnosis, and race/ethnicity, risk of death for AYA cancer patients residing in neighborhoods with ADI in the highest quartile was greater than that for patients in the lowest quartile (HR: 1.09, 95% CI: 1.00-1.19, p=0.043). Conclusions: Our results in this large multi-ethnic cohort indicate that non-White AYA patients with cancer more commonly live in neighborhoods associated with higher ADI compared to their White counterparts. Even when treated in the same academic setting, AYA cancer patients with higher ADI experienced worse OS across cancers. Although the magnitude of the effect was moderate, the presence of this effect within a tertiary cancer center with existing barriers to care suggests that ADI is a meaningful risk factor impacting survival. Further analysis is warranted to determine the generalizability of these findings to the patient population more broadly. However, the results provide intriguing evidence for potential interventions aimed at supporting AYA cancer patients from disadvantaged backgrounds.

Body image disturbances in adolescent and young adult patients with cancer confronting infertility risk and fertility preservation decisions.

e24175 Background: Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to better elucidate the relationship between oncofertility discussions and body image disturbances in the AYA cancer population. Methods: AYA cancer patients (n = 27) aged 12-25 years whose cancer treatment conferred the risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. Results: Body image concerns, including those related to both physical appearance and body functioning, emerged as common themes. Specific concerns included 1) anticipating and coping with body changes, 2) discomfort in experiencing and discussing one’s own body, 3) fear of judgement, and 4) failing to meet both internal and external expectations of the body. Some participants expressed a sense of loss when learning about infertility risk and the emotional challenges associated with accepting this risk. Several respondents worried that they would be negatively judged by their peers for a perceived defect of the body. Still others struggled with facing the unknown regarding fertility preservation and the difficulty in sharing this information with loved ones and future romantic partners. Conclusions: AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and decisions regarding fertility preservation. In identifying and exploring these themes, future opportunities, and novel interventions for improving oncofertility practice and discussions among AYAs with a focus on body image positivity emerge. These include the dual involvement of multidisciplinary teams (oncology and reproductive medicine) at initial clinical consultation and frequent follow-up contact; AYA and oncofertility-specific peer support programs, both in-person and virtual; and early, frequent involvement of social workers and mental health providers experienced in both cancer care and reproductive medicine.

The genomic landscape of adolescent and young adult (AYA) malignancies using DNA and RNA-based next generation sequencing.

e15091 Background: Survival for adolescents and young adult (AYA) cancer patients (defined as age 15-39 years by the NCI) has not improved compared to survival outcomes in pediatric and older adult patients. Several factors contribute to the outcomes disparity, including lack of access to novel treatments. Currently, only a fraction of AYA cancer patients receive advanced genomic testing. Herein, we aim to characterize the molecular landscape of AYA cancers. Methods: De-identified records of 2,706 AYA patients diagnosed with solid tumors and hematologic malignancies who received Tempus xT next-generation sequencing (NGS) were identified. The prevalence of pathogenic/likely pathogenic (P/LP) single-nucleotide variants (SNVs), insertions/deletions (indels), fusions, and copy number alterations were assessed to describe the somatic landscape. Tumor biomarkers, such as microsatellite instability (MSI) and tumor-mutational burden (TMB) were also analyzed. Results: The cohort consisted of 2,706 AYA patients diagnosed with: central nervous system (N = 779), breast cancer (N = 700), bone and soft tissue sarcomas (N = 226), hematologic (N = 198), and gastrointestinal (GI) (N = 803) malignancies. Among 407 high-grade gliomas (HGG WHO Grade 3 &amp; 4), variants in TP53 167 (41%), 136 (33%) IDH1, 125 (31%) ATRX, and 48 (12%) TERT were seen. Among the 82 patients with low-grade glioma (LGG, WHO Grade 1 &amp; 2), 42 (51%) had a variant in IDH1, 40 (49%) TP53, and 35 (43%) ATRX. Among 269 patients with HR+ HER2- breast cancer, 82 (30%) had variants in TP53, 66 (25%) PIK3CA, 46 (17%) GATA3, 43 (16%) FGFR1 and 34 (13%) in ESR1. In triple-negative breast cancers (TNBC), 95 (77%) had a variant in TP53, and 9 (7.3%) in BRCA1. In ewing sarcomas (N = 36), 28 (78%) patients had a fusion with EWSR1, with TP53, STAG2, FGFR2, and RET altered in 2 (5.6%) patients. Within osteosarcomas (N = 46), 12 (26%) patients had a variant in TP53 and 9 (20%) in RB1 . In the AML subgroup (N = 34), WT1 was altered in 5 (15%) and FLT3 in 4 (12%) cases. Finally, in the GI cohort (806), 22 (5%) cases were MSI-H. Within colorectal cancer patients (N = 446), 247 (55%) patients had a variant in TP53, 150 (34%) in KRAS, 64 (14%) in PIK3CA, and several with NRG1 (8, 1.8%) and NTRK (3, 0.7%) fusions. Conclusions: We describe the somatic landscape of common malignancies in one of the largest AYA datasets. Additional analyses will focus on how this landscape differs from non-AYA age groups.