Adolescents And Young Adults Age Research Articles

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.

Utilization of the Adolescent and Young Adult Psycho-Oncology Screening Tool in a Pediatric Hospital Adolescent/Young Adult Program.

Purpose: The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. Methods: AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent t-tests, and binary logistic regressions were conducted for data analysis. Results: Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. Conclusions: Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.

A retrospective machine learning–based analysis of nationwide cancer comprehensive genomic profiling data to identify features associated with recommendation of mutation-based therapy.

e13510 Background: Comprehensive genomic profiling (CGP) has played key roles in cancer precision medicine through optimization of therapeutic interventions based on genomic alterations in cancer cells. However, the probability of discovering mutation-based treatments through CGP remains low. To enhance the effectiveness and efficiency of cancer precision medicine, it is crucial to identify patients who are likely to benefit from CGP tests. This study aims to identify characteristics of patients in which mutation-based treatments are discovered by CGP tests. Methods: We retrospectively analyzed data from 60,655 patients who underwent CGP tests and were registered in the Center for Cancer Genomics and Advanced Therapeutics (C-CAT), the national data center for cancer CGP in Japan. The C-CAT database covers 99.7% of cancer patients who have undergone CGP tests in Japan. Major cancer types included 10,182 cases of bowel cancer, 8,691 pancreas cancer, 5,062 biliary tract cancer, and 3,777 breast cancer. We developed an eXtreme Gradient Boosting (XGBoost) model using machine learning, and used clinical information as input to predict whether one or more Japanese Pharmaceuticals and Medical Devices Agency (PMDA)-approved drugs are discovered through CGP tests or not. Shapley Additive Explanations (SHAP) was employed to extract significant features that contribute to the model prediction. Results: The prediction model achieved an area under the receiver operating characteristic curve of 0.826 for the overall cancer population. Positive SHAP values were observed for patients with breast (mean SHAP in breast cancer patients: 1.38), lung (1.08), bowel (0.75), and pancreas cancers (0.35), while negative SHAP values were associated with head and neck (-1.75), cervical cancers (-1.54), and brain (-1.33). Positive SHAP values were also associated with presence of liver or lymph node metastasis (0.23, 0.08), shorter intervals between diagnosis and CGP testing or specimen collection and CGP testing, and advanced age. Similar trends were observed in cancer-type-specific prediction models, which also identified their own unique features. In the adolescent and young adult (AYA) age group, primary brain tumors were strongly associated with negative SHAP values (-1.37). Conclusions: Our machine learning-based analysis of nationwide CGP data identified features that predict cases in which mutation-based treatments are discovered by CGP tests, both in the overall cancer population and within specific cancer types and the AYA age group. Expedited CGP testing is recommended for patients who match the identified profile to facilitate early targeted therapy interventions.

Psychological distress and mental health care utilization among Black survivors of adolescent and young adult cancer.

Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. National Health Interview Survey data (2010-2018) were analyzed that identified non-Hispanic Black (hereafter, Black) survivors of AYA cancer and age- and sex-matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR],1.64; p<.001), use mental health care (OR,1.53; p=.027), report an inability to afford mental health care (OR,3.82; p<.001), and use medication for anxiety and/or depression (OR,2.16; p=.001). Forty-one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18-39 years (vs. 40-64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population.

Telemedicine for Adolescent and Young Adult Long-Acting Reversible Contraception Post-insertion Visits: Outcomes over 1 Year

Study ObjectiveTelemedicine for long-acting reversible contraception (LARC) care is understudied given the rapid implementation of these services in response to the COVID-19 pandemic. We compared outcomes over 1 year of adolescents and young adults (AYAs) attending a LARC post-insertion visit via telemedicine vs in person. DesignLongitudinal cohort study. SettingFour academic adolescent medicine clinics in the United States. ParticipantsAYAs (ages 13-26 years) who received LARC between 4/1/20 and 3/1/21 and attended a post-insertion visit within 12 weeks. Interventionsnone. Main outcome measuresOutcomes over 1 year were compared between AYAs who completed this visit via telemedicine vs in person. We analyzed the data using descriptive statistics, bivariate analyses, and regression models. ResultsOf 194 AYAs (ages 13.9-25.7 years) attending a post-insertion visit, 40.2% utilized telemedicine. Menstrual management (odds ratio (OR) = 1.02; confidence interval (CI): 0.40-2.60), acne management (P = .28), number of visits attended (relative risk (RR) = 1.08; CI: 0.99-1.19), and LARC removal (P = .95) were similar between groups. AYAs attending via telemedicine were less likely than those attending in person to have STI testing (P = .001). Intrauterine device expulsion or malposition and arm symptoms with implant in situ were rare outcomes in both groups. ConclusionRoughly 40% of AYAs attended a post-insertion visit via telemedicine during the first year of the COVID-19 pandemic and had similar 1-year outcomes as those attending in person. The decreased likelihood of STI testing for those using telemedicine highlights the need to provide alternative options, when indicated, such as asynchronous or home testing. Our results support the use of telemedicine for AYA LARC post-insertion care and identify potential gaps in telemedicine care which can help improve clinic protocols.

Abstract 3955: A proteogenomic study of high-grade glioma among adolescents and young adults

Abstract To unravel the molecular mechanisms underlying high-grade glioma (HGG) in adolescent and young adult (AYA) patients, we conducted a comprehensive proteogenomic analysis for 34 AYA (age 15-40) and 59 pediatric (age 0-15) HGG cases. Our approach involved whole genome sequencing, methylation profiling, RNA sequencing, and a suite of mass spectrometry-based proteomic experiments, including global proteomic, phosphoproteomic, and glycoproteomic profiling. The proteomics study successfully identified and quantified approximately 11,000 proteins, 33,000 phosphosites, and 3000 glycopeptides with a 50% missing filtering threshold. To identify the unique characteristics of AYA HGG in contrast to both pediatric and adult HGG, we further integrated a proteogenomic dataset of 99 adult GBM tumors previously published by CPTAC and collaborators (PMID: 33577785). Our study unveiled a collection of mutations, copy number variations, epigenetic modifications and gene fusions that exhibited different frequencies across tumors from pediatric, AYA, and adult patients. Moreover, the influence of these genetic variations on RNA/protein activities also varied across different age groups. Clustering analysis using age-dependent molecular profiles revealed striking differences in RNA/protein/phosphosite activities between patients aged 15-26 and 26-40. Additionally, significantly better overall survival (OS) was observed in the 26-40 age group compared to all other age groups, highlighting distinct biological characteristics within the AYA category that differentiate adolescents from young adults.By leveraging proteogenomic datasets from normal brain tissues (PMID: 30518843), we identified genes, proteins, and pathways with differential age-dependent molecular profiles between tumor and normal brain tissues. Notably, this analysis highlighted significant alterations in proteins from the oxidative phosphorylation, tricarboxylic acid (TCA) cycle, and myelin sheath pathways in tumors compared to normal tissues, some of which were found to be sex-specific.To search for prognostic markers, we introduced a novel approach called Trans-Population Survival Analysis through Interpolation of Age-Dependent Tumor Molecular Profiles. Applying this method on the kinase activity scores derived from the phosphoproteomic data, we identified 150 kinases whose activities were significantly associated with OS among AYA patients. Additionally, employing a causal network analysis tool, we pinpointed six kinases causally linked to OS, suggesting their potential as treatment targets. This study not only characterizes the molecular landscape of AYA HGG but also explores the disease trajectory across the lifespan. Our findings shed light on the intricate interplay of various factors influencing glioma etiology and patient outcomes, paving the way for a deeper understanding of HGG in the AYA population. Citation Format: Nicole Tignor, Mateusz P. Koptyra, Shrabanti Chowdhury, Weiping Ma, Jo Lynne Rokita, Marina Gritsenko, Xiaoyu Song, Giacomo B. Marino, Eden Z. Deng, Francesca Petralia, Azra Krek, Dmitry Rykunov, Felipe da Veiga Leprevost, Noshad Hosseini, Komal S. Rathi, Yingwei Hu, Simona Migliozzi, Tomer Yaron, Weijia Fu, Bo Zhang, Yuankun Zhu, Miguel A. Brown, Jeffrey R. Whiteaker, Clinical Proteomics Tumor Analysis Consortium (CPTAC), Children’s Brain Tumor Network (CBTN), Mehdi Mesri, Ana I. Robles, Karin Rodland, Lewis C. Cantley, Antonio Iavarone, Kenneth Aldape, Marcin Cieślik, Alexey I. Nesvizhskii, Joseph E. Ippolito, Joshua B. Rubin, Amanda G. Paulovich, Hui Zhang, Avi Ma'ayan, Tao Liu, Phillip B. Storm, Adam C. Resnick, Brian R. Rood, Pei Wang. A proteogenomic study of high-grade glioma among adolescents and young adults [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 3955.

Feasibility pilot trial of a tailored medication adherence-promotion intervention for adolescents and young adults with cancer: Study design and protocol

BackgroundMedication non-adherence is common among adolescents and young adults (AYAs) with cancer and associated with poor health outcomes. AYAs with cancer endorse multiple barriers to adherence that differ across individuals, suggesting that tailoring intervention content to an AYA's specific barriers may have the potential to improve adherence. The purpose of this manuscript is to report on ORBIT-guided Phase I design efforts to create the first tailored adherence-promotion intervention for AYAs with cancer and the study protocol for the ongoing Phase II pilot feasibility trial. MethodsPhase I design included qualitative interviews (n = 15 AYAs) to understand patient preferences for adherence-promotion care, development and refinement of a best-worst scaling exercise barriers tool (n = 5 AYAs), and development of intervention modules and a tailoring algorithm. In the ongoing Phase II pilot feasibility trial, AYAs (ages 15–24 years) with cancer currently taking oral chemotherapy or prophylactic medication will be recruited from three children's hospitals. Feasibility, acceptability, and usability will be assessed and these outcomes along with data on medication adherence will be used to inform the next phases of intervention development and testing. ConclusionsIf promising, this program of research ultimately has the potential to equip clinicians with additional strategies for supporting adherence among AYAs with cancer.NCT05706610

Brain Tumor Imaging in Adolescents and Young Adults: 2021 WHO Updates for Molecular-based Tumor Types.

Published in 2021, the fifth edition of the World Health Organization (WHO) classification of tumors of the central nervous system (CNS) introduced new molecular criteria for tumor types that commonly occur in either pediatric or adult age groups. Adolescents and young adults (AYAs) are at the intersection of adult and pediatric care, and both pediatric-type and adult-type CNS tumors occur at that age. Mortality rates for AYAs with CNS tumors have increased by 0.6% per year for males and 1% per year for females from 2007 to 2016. To best serve patients, it is crucial that both pediatric and adult radiologists who interpret neuroimages are familiar with the various pediatric- and adult-type brain tumors and their typical imaging morphologic characteristics. Gliomas account for approximately 80% of all malignant CNS tumors in the AYA age group, with the most common types observed being diffuse astrocytic and glioneuronal tumors. Ependymomas and medulloblastomas also occur in the AYA population but are seen less frequently. Importantly, biologic behavior and progression of distinct molecular subgroups of brain tumors differ across ages. This review discusses newly added or revised gliomas in the fifth edition of the CNS WHO classification, as well as other CNS tumor types common in the AYA population.

Awareness and utilization of pre-exposure prophylaxis and HIV prevention services among transgender and non-binary adolescent and young adults.

Transgender and gender non-binary (TGNB) individuals are disproportionally affected by HIV and face high rates of discrimination and stigmatization, resulting in limited access to HIV prevention services. Pre-exposure prophylaxis (PrEP) is highly efficacious for reducing the risk of HIV transmission. However, little research is available regarding PrEP awareness and utilization among TGNB adolescents and young adults (AYA). TGNB AYA ages 15-24 years old were recruited between December 2021 and November 2022 for participation in a one-time, anonymous online survey study to assess PrEP awareness and perceptions, as well as barriers to its use. Participants were recruited from seven academic centers offering gender-affirming care to TGNB AYA across the United States. Of the 156 TGNB AYA individuals who completed the survey, most (67%) were aware of PrEP; however, few (7%) had been prescribed PrEP. Many (60%) had not spoken to a medical provider and, even if the medication was free and obtained confidentially, most participants did not plan to take PrEP due to low perceived HIV risk, lack of PrEP knowledge, and concern about interactions between their hormone therapy and PrEP. These findings underscore the need for broad PrEP educational efforts for both TGNB AYA and their providers to improve knowledge, identify potential PrEP candidates among TGNB AYA and improve access by addressing identified barriers.

EBV Prevalence and Overall Survival in the Multi ethnic Study of Hodgkin Lymphoma (MESH)

Background: Classic Hodgkin Lymphoma (CHL) is a B-cell lymphoma characterized by rare Hodgkin Reed-Sternberg (HRS) cells surrounded by immune cell infiltrates that define histological subtypes. In 1987, Weiss discovered that a minority of CHL tumors harbored an Epstein-Barr virus (EBV) genome integrated into the genome of the HRS cell (EBV+ tumors) (Weiss, et al., Am J Pathol, 1987). A population-based study conducted in California reported 27% of CHL tumors were EBV+ with a higher prevalence in younger and older patients compared to adolescents and young adults (AYA), and in Hispanics compared to other racial/ethnic groups (Keegan, et al., JCO, 2005). We evaluated EBV tumor status and demographic characteristics and survival in a multiethnic set of CHL patients the Multi Ethnic Study of Hodgkin lymphoma (MESH). Methods: We collected 891 multiethnic cases of formalin-fixed paraffin-embedded tumor blocks of CHL diagnosed between 1978 and 2018. Patients were identified from cancer centers and hospitals in Atlanta, Los Angeles County, Mexico City, Philadelphia, Detroit, and the Residual Tissue Repositories from Hawai'i and Los Angeles County. CHL diagnosis and histological subtype were confirmed by hematopathologist review. Demographic and clinical information was collected from patient medical charts and state cancer registries. EBV tumor status was assigned based on EBER1 in situ hybridization performed using the Novocastra™ Epstein-Barr virus ISH Kit (Ready-to-use [RTU], Leica Microsystems, Inc. Buffalo Grove, IL) on 2mm cores arranged on tissue microarrays. EBV+ cases were defined by nuclear or cytoplasmic positivity in &amp;gt;5% of HRS cells, determined by a study hematopathologist (IS). We tested associations between EBV tumor status and age at diagnosis (pediatric [&amp;lt;15 years], adolescent/young adult [AYA, 15-39 years], older adults [40+ years]), sex, race/ethnicity (Hispanic, Black, Non-Hispanic White [NHW], Asian, and Hawaiian/Pacific Islander [HPI]), and histology (Nodular Sclerosis [NS]; Mixed Cellularity [MC]; Lymphocyte Rich [LR]; Lymphocyte Depleted [LD]) using χ-squared tests. We also assessed the association between EBV tumor status and overall survival (OS) right censored at 5 years using Kaplan-Meier and multivariable Cox regression analysis adjusted for age at diagnosis (continuous), sex, race/ethnicity, and histology (NS vs. other histologic subtypes). Results: To date, EBV results were available for 638 cases enrolled in the study. Frequency among those with EBV results was as follows: pediatric=45 (7%), AYA=373 (59%), older adults=217 (34%), male=347 (54%), Hispanic=246 (39%), Black=118 (19%), NHW=179 (28%), Asian=60 (9%), and HPI=20 (3%). Overall, 30% of the cases were EBV+. EBV positivity was higher in MC compared to NS cases across all age groups (p=&amp;lt;0.001). By histology and age, EBV positivity for both NS and MC was higher in pediatric (NS [45%]; MC [90%]) and older adult (NS [29%]; MC [64%]), compared to AYA cases (NS [16%]; MC [39%]). The AYA age group comprised the largest number of cases, the majority of which were EBV− (Figure 1). EBV+ cases were more common among males compared to females, with higher prevalence among males of pediatric (62%) and older ages (46%) compared to AYA males (24%), following the same pattern as histology. EBV positivity also differed by race/ethnicity (p=0.002), with the highest prevalence in Hispanics (38%) and lowest in HPI (10%). Survival analyses showed a statistically significantly different OS by EBV status (p&amp;lt;0.001), but after adjusting for age, sex, race/ethnicity, and histology, there was no statistically significant difference in OS between EBV+ and EBV− tumor patients (HR=1.08, p=0.744). Conclusion: Our results were largely consistent with the previous literature on EBV positivity prevalence in CHL by demographic characteristics. We report low EBV positivity in HPI for the first time, albeit with small numbers in that group. The difference in EBV tumor status by sex is noteworthy, with females having a higher EBV− AYA peak, and males having a higher EBV+ AYA peak. Unlike previous reports, we did not observe an association between EBV status and survival with adjustment for demographic and clinical variables. More studies with diverse populations and larger sample sizes are needed to better understand the complex interplay of EBV patterns in CHL tumors and their significance in different populations.

Characteristics and Outcomes of Adolescent, Young Adults, and Adults 40-50 Years Old with Multiple Myeloma: A Single Center Experience

Background Multiple myeloma (MM) is a malignant tumor with abnormal proliferation of plasma cells. Adolescent and Young Adult (AYA) patients are defined as patients between 15-39 years of age. Multiple myeloma is uncommon in non-elderly populations. Its prevalence is only 2% in AYA age group and only 10% in patients 40-50 years old. The feature of MM is not well known or understood in those two age groups. In this retrospective study we describe the clinical characteristics, cytogenetics, prognostic markers, treatments given and outcomes of MM in AYA and 40-50 years old patients. Methods We retrospectively analyzed data from the clinical database of our single tertiary hematology center, The National Center for Cancer Care and Research, Doha, Qatar. This center serves a country's population of about 2,8 million people. All patients diagnosed with MM between the age 50 or less during the period of January 2007 to December 2022 were included. Results Seventy-four patients were diagnosed at our centre with MM before the age of 50 years, total of all MM cases 222 (33%) Males was predominant 55/74 (74.3 %) with a median age of 41 years (range, 15-49). Most of the patients were from Asian 55%. At diagnosis patients had a median hemoglobin of 10.2 g/dl, creatinine 294 umol/L, total protein 90 gm/L, albumin 34.75 gm/L, calcium 2.7 mmol/L, LDH 255 U/L, IgG 2289.75 mg/dl, IgA 424.15 mg/dl, IgM 34.2 mg/dl, FLC-Kappa 1993 mg/L and FLC-Lambda 1177 mg/L. Median of bone marrow filtration by plasma cell was 51 %. Most of the patients presented at advance stages with 44 patient (59%) presented as IIIA Durie Salmon or stage III and IV by ISS 70 %. IgG Kappa most frequent type of MM 18 patients (24%), followed by Free light chain kappa (23%), IgG Lambda (18%) and others including two cases of plasmacytoma (Most recurrent cytogenetics were diploid cytogenetics in 42 patients (57%), while 7 patients (9%) had complex cytogenetics. Twenty-eight patients had spinal cord compression at single or multiple levels ( thoracic were most common site 20%) while 3 patients had pathological fractures. Bortezomib based regimen is most one used to treat our patients. Daratumumab- Velcade, Revlimid, and dexamethasone (D-VRD) was used for 35 patients (74%) and Velcade,Cyclophosphamide and Dexamethasone VCD in 20 patients (27%). The first response to treatment showed completed remission (CR) in 35 patients, very good partial remission in 10 patients, partial response in 9 patients, four patients either refractory or primary refractory disease and one patient with stable disease. Thirty -five patients (48%) underwent their first autologous bone marrow transplant ASCT. A total of 8 patients underwent second ASCT and one patient underwent third ASCT. After a median duration of follow up of 6.25 years and 72 % of the patients were still alive. We compared the characteristics and outcome for the AYA group (18-39) with patient age group 40 to 49 years. Although there was no statistical significance difference between the two groups regarding overall survival (p=0.21) , the older group had more cases of spinal cord compressions and more cases of refractory disease. Patient characteristics are described in Table 1. Conclusion One third of MM patients in our center are younger than 50 years. These patients tend to present with advanced stage and serious manifestation such as spinal cord compression. IgG kappa and free light chain are the most common myeloma type in this cohort. D-VRD is the most used protocol with a good response rate. Patient characteristics and treatment outcomes are the same for AYA patients compared with patients 40-49 years old (p=0.21). Patients who received first transplant had better OS compare the those who didn't (p0.01)

Disease-Modifying Therapies for Sickle Cell Disease: Decisional Needs and Supports Among Adolescents and Young Adults

Introduction: Adolescents and young adults (AYAs) with sickle cell disease (SCD) often experience significant challenges in disease management. Hydroxyurea and several newer disease-modifying therapies have demonstrated health benefits; however, uptake of these therapies remains suboptimal. Shared decision-making is one promising solution to addressing barriers in uptake and to improve health outcomes for AYAs with SCD. A thorough understanding of AYA's decisional needs can guide the development of tailored decisional supports and promote shared decision-making. Informed by the Ottawa Decision Support Framework, this study aimed to examine decisional needs and supports reported by AYAs with SCD, their caregivers, and SCD healthcare providers. Methods: Semi-structured qualitative interviews were conducted with AYAs ages 15-25 years with SCD ( n=14) and caregivers of AYAs with SCD ( n=11) receiving care at two hospitals in the mid-Atlantic region of the US. Qualitative data were also obtained through online crowdsourcing with SCD providers across the US ( n=40). Most AYAs (93%) identified as non-Hispanic Black ( M age=21 years, 57% male) and had SS genotype (79%). Most caregivers were female (80%) and all identified as non-Hispanic Black (100%). About two-thirds of healthcare providers were female (65%) and non-Hispanic White (65.0%), with an average of 14.8 years in practice ( range=2-57 years). Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. Adequate inter-rater reliability (Cohen's Kappas &amp;gt; .80) and thematic saturation were achieved. Results: AYAs and caregivers reported needing six areas of support when deciding on disease-modifying therapies: resolving decisional conflicts, gaining knowledge, clarifying expectations, garnering supports and resources, navigating complexities in the decision, and addressing other personal concerns. Families reported receiving supports from providers that facilitated their decision-making by helping them: gain knowledge, clarify expectations, address other personal concerns, build rapport with providers, and resolve unreceptiveness or ambivalence to making a decision. Providers reported offering additional supports targeting: inadequate experience in implementing therapies (e.g., pill swallowing), inadequate health and social services and financial assistance, and inadequate instrumental support (e.g., transportation). Conclusions: This research highlights the needs AYAs and caregivers identify when making decisions about disease-modifying therapies for SCD and the decision supports offered by healthcare providers. Decisional needs reported by families generally corresponded to supports offered by providers. Providers also highlighted additional supports that may be helpful for families (e.g., instrumental supports, such as financial, emotional, and skillset assistance). Findings will inform the development of a shared decision-making intervention for AYAs with SCD, their caregivers, and healthcare providers. Future research is needed to examine which decision supports may be most impactful to promote shared decision-making for disease-modifying therapies.

Chronic Myeloid Leukemia in Adolescents and Young Adults: A SEER-Based Analysis of Characteristics and Survival Outcomes of 1565 Patients

Introduction: Adolescents and Young Adults (AYA) are individuals between 15-39 years old. There are an estimated 1 million new cases of cancers in this age group yearly [1]. Although Chronic Myeloid Leukemia (CML) is typically a disease of middle-aged and elder patients, with a median age of 62 years [1], AYA accounts for about 22.1% of all CML cases [2]. There has been little focus directed towards this age group and most studies focus on the middle-aged and elderly. Despite the remarkable improvement in the survival of CML over the years, the largest study to date [3] suggested poor survival outcomes for patients in underserved populations and with low income. We aimed to determine whether sociodemographic differences exist in the AYA age group. Method: The Surveillance, Epidemiology, and End-Result (SEER) registry research plus database 17 (2000 -2020) was used to assess and compare the survival outcomes in the AYA group and older population diagnosed with CML. Both univariate and multivariate analyses were performed. Cox proportional hazards regression was used to determine prognostic factors for survival. A two-sided p-value ≤0.05 was considered significant. Results: A total of 6,319 patients with CML were identified, of which 75.2% (n= 4754) were adults ≥40 years, and 24.8% (n= 1565) were AYAs . Amongst the AYA, 51.4% (n=804) were Non-Hispanic White (NHW), 25 % (n=390) were Hispanics, 12.1% (n=189) were Non-Hispanic Black (NHB), 10.5% (n=164) were Non-Hispanic Asian or Pacific Islander (NHAPI) and 1.2% (n=18) were Non-Hispanic American Indian/Alaska Native (NHAIA) [Table 1]. The frequency of Hispanics in the AYA group was more compared to adults ≥40 years (25% vs 12.9%). NHWs had a lower frequency in the AYA group compared to adults ≥40 years (51.4% vs 67.5%) and NHBs had a similar distribution in both age groups (12.1% vs 11.6%). The proportion of mortality attributed to CML was lower in the AYA group compared to older adults ≥40 years (7.7% vs 11.9%). The results for individual Cox regression for each racial group show that AYA Hispanic males had a worse prognosis than females (HR= 2.930, 95% CI: 1.234-6.960), such observation was not seen in other AYA races [Table 2] but it was seen in Hispanic adult males ≥40 years (HR= 1.583, 95% CI: 1.074-2.334). Also, we identified that for patients aged ≥40 years, male sex was an independent poor prognostic factor for NHW (HR= 1.259, 95% CI: 1.074-1.476) and NWB (HR=1.879, 95% CI: 1.232-2.864) [Table 2]. Conclusion: Our study shows similar demographic characteristics between AYA and adults ≥40 years old. However, AYAs are less likely to die from CML compared to adults ≥40 years. Hispanic males appear to have a worse outcome than females, an observation seen in both age groups, and is independent of other analyzed prognostic factors. More research is needed to examine and identify other prognostic factors of CML in AYA with the aim of improving their survival outcomes.

Comprehensive cancer-related resources for adolescents and young adults (AYAs) treated in the community setting: 2022 Landscape survey results.

151 Background: Availability of guideline-endorsed, cancer-related resources for adolescents and young adults (AYAs: aged 15–39) with cancer is unknown. AYAs often receive treatment in community settings. We describe the current landscape of comprehensive cancer care resources for AYAs treated in community settings. Methods: NCI Community Oncology Research Program (NCORP) practice groups completed the Landscape Assessment in 2022 to describe available infrastructure, resources, and research capacity. Practice groups were included in this analysis if ≥10% of their annual cancer cases were within the AYA age range, or at least 50 AYA cancer cases are treated annually. We described the proportion of practices serving AYA patients with access to fertility preservation, mental health services, genetic testing and counseling, nutritional counseling, distress monitoring (psychosocial and financial), palliative care, and survivorship programs. Results: Of 271 responding practice groups, 77 (28%) met criteria for treating AYAs, whereas 102 (38%) did not meet criteria. The remaining 92 (34%) could not be classified due to missing data. Among the 77 practices treating AYAs, fertility preservation was available at 51% (oocyte cryopreservation) and 58% (sperm banking) of practices. While nutritional support and genetic testing were widely available (99% and 100% respectively), only 49% of practices treating AYAs offered survivorship programs (Table 1). Conclusions: Many AYAs receiving treatment in community settings lack access to key resources for cancer care, including fertility preservation and survivorship services. Future research should seek to identify barriers and facilitators to offering comprehensive resources in NCORP practices that serve AYAs and to advance understanding of AYA uptake of available resources.[Table: see text]

Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer.

Adolescents, young adults with cancer receive limited psychosocial and spiritual support near death.

The roles and experiences of adolescents with cystic fibrosis and their parents during transition: A qualitative interview study

PurposeInadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition. MethodsWe conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved. Results18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs’ changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning. ConclusionsThis study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents’ desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents’ challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs’ skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents.

Intrapersonal and Interpersonal Disengagement Coping: Associations with Emotions of Youth At-Risk for Huntington's Disease.

Families in which a parent has Huntington's disease (HD) are faced with significant stressors that can contribute to difficulties in communicating together about illness-related concerns. Family members who use more disengagement coping strategies, including denial and avoidance, to deal with illness-related stressors may have the greatest challenges to effective communication. The current study examined the associations of intrapersonal and interpersonal disengagement coping responses with observed and reported emotions of adolescents and young adults (AYA) at genetic risk for HD. Families included 42 AYA (n = 26 females) ages 10 to 34 (M = 19 years, 11 months; SD = 7 years, 6 months) and their parent with HD (n = 22 females, M age = 46 years, 10 months; SD = 9 years, 2 months). Dyads participated in observations of communication and completed questionnaires about disengagement coping and internalizing symptoms. Disengagement coping of AYA was unrelated to their observed and reported emotional difficulties (intrapersonal coping). However, there was evidence for the importance of interpersonal disengagement coping, as AYA's negative affect was observed and reported to be highest when both AYA and their parents reported using high levels of avoidance, denial, and wishful thinking to cope with HD-related stress. The findings underscore the importance of a family-oriented approach to coping and communication in families affected by HD.

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.

Adolescents and young adults (AYAs) with cancer receive high rates of medically intensive measures at the end of life. This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among AYAs at the end of life as one potential influence on care received. This was a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving care at one of three sites between 2003 and 2019, including documented conversations about goals of care and advance care planning, and care received. A majority of AYAs were female (54%) and White (61%); 12% were Asian, 8% Black, and 27% Hispanic. Most patients had documented discussions about prognosis (86%), goals of care (83%), palliative care (79%), hospice (79%), and preferred location of death (64%). When last documented goals of care were evaluated, 69% of patients wanted care focused on palliation; however, 29% of those with palliative goals spent time in the intensive care unit (ICU) in the last month of life, and 32% had multiple emergency room (ER) visits. When goals-of-care discussions happened earlier, >30 days before death, AYAs were less likely to receive chemotherapy in the last 14 days of life (P = .001), ICU care (P < .001), ER visits (P < .001), and hospitalizations in the last month (P < .001). High rates of medically intensive measures among AYAs near the end of life do not appear to be the result of a lack of discussions about goals of care and advance care planning. Although some interventions may be used to support palliative goals, earlier discussions have potential to reduce late-life intensive measures.

Social media interactions after diagnosis: Social experiences of adolescents and young adults (AYA) with cancer

Purpose Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction. Methods Eight AYA ages 15–21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis. Results Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways. Conclusions Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment.

"I won't get to live my life the way I planned it":A qualitative analysis of the experiences of adolescents and young adults with advanced cancer.

Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer. We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer. A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions … were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone." Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.