Adolescents And Young Adults Age Research Articles

2.1 PSYCHOPHARMACOLOGICAL IMPORTANCE OF MEDICATION ADHERENCE AMONG ADOLESCENTS AND YOUNG ADULTS WITH BIPOLAR DISORDER

Pharmacotherapy is effective for bipolar disorder (BD) in adolescents and young adults (AYAs); however, suboptimal adherence, often defined as missing ≥80% of prescribed medication, occurs in greater than 65% of AYAs with BD. Poor adherence is associated with relapse. The objectives of this presentation are to: 1) summarize findings of a recent systematic literature review (SLR) on adherence in pediatric BD; 2) evaluate focus group and usability data from AYAs and family stakeholders; and 3) review methods of a randomized controlled trial pilot testing Customized Adherence Enhancement AYA (CAE-AYA), a novel behavioral intervention to promote adherence. The SLR found 6 original reports specific to pediatric BD. Ten AYAs with BD and 4 caregivers participated in focus groups/interviews, and 8 AYAs provided usability testing of CAE-AYA. The randomized controlled trial is testing the feasibility and preliminary efficacy of CAE-AYA vs enhanced treatment as usual in 40 AYAs (ages 16-21 years) with BD and suboptimal adherence. The primary outcome is change from baseline in adherence assessed with the Tablets Routine Questionnaire and electronic adherence monitoring. Secondary outcomes include mental illness symptoms, quality of life, and the posited mechanisms of adherence change as it relates to the adherence barriers of inadequate bipolar knowledge, poor communication with clinicians/family, unstable medication routines, and risky behaviors. Significant factors affecting adherence in AYAs include gender, race, polypharmacy, comorbidity, socioeconomic status, family functioning, medication side effects, stability of bipolar diagnosis, and number of follow-up visits. Qualitative findings noted similar issues, as well as challenges in shared decision making in BD management with parents/guardians. Usability testing of CAE-AYA modules revealed the need to have matched language with developmental level (eg, teenager vs young adult) and appealing visual images to enhance engagement. Adherence promotion often requires a multipronged approach and ideally addresses adherence barriers specific to an individual and their family and support network. Ongoing randomized controlled trial outcomes will inform next steps in further developing effective adherence promotion approaches for high-risk BD youth.

Love, joy and necessity - A phenomenological study of food and meals in adolescents and young adults with cancer receiving high-emetogenic chemotherapy.

This study explored how the phenomenon of meals appeared in the interrelationship between adolescents and young adults (AYAs) receiving high-emetogenic chemotherapy, their next of kin and health professionals in the clinical setting. Data were collected by 140h of participant observation conducted to gain insights into the nature of how meals appeared in the interrelationship between 12 AYAs (age 15-29 years), their next-of-kin and health professionals. The AYAs were patients with oncological and haematological diseases recruited from three university hospital departments. Data analysis was guided by van Manen's hermeneutic-phenomenological approach. The essential meaning of the phenomenon may be characterized by the overarching theme; 'Seeking the joy of meals in the shadow of treatment' and the following three themes: 'Meals as a necessary evil' (AYAs); 'Meals as a matter of love' (next-of-kin); and 'Meals in the shadow of medical treatment' (health professionals). Meals is a multi-facetted and complex phenomenon that has different meanings to AYAs, next-of-kin and health professionals. To the AYAs, meals emerged as a necessary evil in connection with which urges to eat occurred as glimpses of desire. Prominent feelings of powerlessness and food as love were highlighted by the next-of-kin, whereas food and meals appeared secondary to treatment for health professionals, reflecting the traditional biomedical paradigm. The findings revealed that adopting a holistic approach to AYAs concerning meals can have the potential to increase their food intake.

HEALTH-RELATED QUALITY OF LIFE IN ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE IS ASSOCIATED WITH REDUCTION IN SCHOOL AND WORK PRODUCTIVITY RATHER THAN PHYSICAL IMPAIRMENT: A MULTIDISCIPLINARY STUDY.

Inflammatory bowel diseases (IBD), comprising Crohn's disease and ulcerative colitis, are chronic inflammatory diseases of the gastrointestinal tract that often have their onset among adolescents and young adults (AYA). IBD are characterized by episodes of active disease interspersed with periods of remission, and its activity is inversely correlated with health-related quality of life (HRQL). This study aimed to determine whether AYA in remission or with low IBD activity would exhibit HRQL similar to that of age-matched healthy individuals, and whether demographic and disease factors could affect HRQL using a 'patient-reported outcome' instrument. This study enrolled only AYA with IBD, with low activity. This research included five multidisciplinary clinics of two academic hospitals: Paediatric Gastroenterology, Gastroenterology, Coloproctology, Paediatric Rheumatology and Adolescent divisions, São Paulo, Brazil. A total of 59 AYA with IBD (age, 13-25 years) and 60 healthy AYA (age, 13-25 years) completed the Pediatric Quality of Life Inventory 4.0 and 36-Item Short-Form Health Survey questionnaires and the visual analogue scale (VAS) for pain. Demographic data, extra-intestinal manifestations, treatment, and outcomes regarding CD and UC were evaluated. AYA with IBD and healthy controls were similar with respect to median ages (18.63 [13.14-25.80] years vs 20.5 [13.68-25.84] years, P=0.598), proportion of female sex (42% vs 38%, P=0.654), and percentage of upper middle/middle Brazilian socioeconomic classes (94% vs 97%, P=0.596). The school/work score was significantly lower in AYA with IBD than in healthy controls (70 [10-100] vs 75 [5-100], P=0.037). The 'general health-perception' score was significantly lower in AYA with IBD than in healthy controls (50 [10-80] vs 0 [25-90], P=0.0002). The median VAS, FACES pain rating scale, and total VAS scores were similar between the two groups (2 [0-10] vs 3 [0-9], P=0.214). No association between HRQL and clinical and demographic parameters was identified among IBD patients. AYA with low IBD activity reported poor HRQL in school/work and general health perception domains, which highlights a disability criterion in this vulnerable population.

PSYCHOTHERAPY WITH MEDICALLY ILL CHILDREN: EARLY CHILDHOOD TO TRANSITIONAL-AGE YOUTH IN 2021

This session aims to equip attendees with selected psychotherapeutic tools for the mental health assessment and treatment of medically ill children and adolescents situated in a developmental framework. Participants will have an opportunity to discuss the effects of medical illness on development from early childhood through adolescent and young adult (AYA) age groups. They will learn about therapeutic interventions with young medically ill children aged 0-6 years and their families. Presenters will share experiences on establishing remote services on the pediatric unit and emergency service with medically ill children during the pandemic and discuss bedside psychotherapy strategies. Participants will also have an opportunity to learn about psychotherapeutic strategies regarding chronic illness themes in the AYA age group, leading up to and including end-of-life care. Participants will gain a new understanding of the effects of medical illness on development from early childhood through AYA age groups. Methods of psychotherapeutic engagement are evolving, whether due to forced adaptations during the COVID-19 pandemic or through recently developed psychotherapeutic tools from parent-child interaction, dignity, and meaning-centered psychotherapies for patients and families. Effective psychotherapeutic applications across the pediatric continuum of care are essential for optimal implementation and outcomes. Children and adolescents remain subject to chronic and terminal medical illnesses with comorbid mental health conditions and considerations. Even as medical advances have extended life expectancies, the need for relevant, practical, and effective delivery of psychotherapeutic interventions—both in person and virtual—has also increased. Child and adolescent psychiatrists are advised to be current with helpful treatment modalities in their roles as psychotherapists and multidisciplinary treatment team leaders working in settings with medically ill youth.

The Burden of Late Effects and Related Risk Factors in Adolescent and Young Adult Cancer Survivors: A Scoping Review

Simple SummaryIt is unclear what the risk of negative health outcomes is after cancer during adolescence and young adulthood. We conducted a review to understand the risk of second cancers, chronic conditions, and death in adolescent and young adult (AYA) cancer survivors and found factors that increase the risk. In total, 652 studies were identified, of which 106 were included in the review: 23 for second cancers, 34 for chronic conditions, and 54 for deaths. The number of included studies increased over time, from four studies in 2010 to 17 in 2020. The studies found that AYA cancer survivors are at an increased risk of second cancers, chronic conditions, and deaths. In particular, the following factors increased risk: radiation exposure for second cancers; younger attained age and earlier calendar period of diagnosis for chronic conditions; and non-Hispanic Black or Hispanic, low socioeconomic status, and earlier calendar period of diagnosis for deaths.Risk factors associated with late effects in survivors of adolescent and young adult (AYA) cancer are poorly understood. We conducted a systematic scoping review to identify cohort studies published in English from 2010–2020 that included: (1) cancer survivors who were AYAs (age 15–39 years) at diagnosis and (2) outcomes of subsequent malignant neoplasms (SMNs), chronic conditions, and/or late mortality (>5 years postdiagnosis). There were 652 abstracts identified and, ultimately, 106 unique studies were included, of which 23, 34, and 54 studies related to the risk of SMNs, chronic conditions, and mortality, respectively. Studies investigating late effects among survivors of any primary cancer reported that AYA cancer survivors were at higher risk of SMN, chronic conditions, and all-cause mortality compared to controls. There was an indication that the following factors increased risk: radiation exposure (n = 3) for SMNs; younger attained age (n = 4) and earlier calendar period of diagnosis (n = 3) for chronic conditions; and non-Hispanic Black or Hispanic (n = 5), low socioeconomic status (n = 3), and earlier calendar period of diagnosis (n = 4) for late mortality. More studies including the full AYA age spectrum, treatment data, and results stratified by age, sex, and cancer type are needed to advance knowledge about late effects in AYA cancer survivors.

High Acceptance and Completion of HIV Self-testing Among Diverse Populations of Young People in Kenya Using a Community-Based Distribution Strategy.

Oral HIV self-testing (HIVST) may expand access to testing among hard-to-reach reach adolescents and young adults (AYA). We evaluated community-based HIVST services for AYA in an urban settlement in Kenya. Peer-mobilizers recruited AYA ages 15–24 through homes, bars/clubs, and pharmacies. Participants were offered oral HIVST, optional assistance and post-test counseling. Outcomes were HIVST acceptance and completion (self-report and returned kits). Surveys were given at enrollment, post-testing, and 4 months. Log-binomial regression evaluated HIVST preferences by venue. Among 315 reached, 87% enrolled. HIVST acceptance was higher in bars/clubs (94%) than homes (86%) or pharmacies (75%). HIVST completion was 97%, with one confirmed positive result. Participants wanted future HIVST at multiple locations, include PrEP, and cost ≤ $5USD. Participants from bars/clubs and pharmacies were more likely to prefer unassisted testing and peer-distributers compared to participants from homes. This differentiated community-based HIVST strategy could facilitate engagement in HIV testing and prevention among AYA.

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer

End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Stage IV or recurrent cancer. Care priorities. Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.

Optimizing scalable, technology-supported behavioral interventions to prevent opioid misuse among adolescents and young adults in the emergency department: A randomized controlled trial protocol

Preventing opioid misuse and opioid use disorder is critical among at-risk adolescents and young adults (AYAs). An Emergency Department (ED) visit provides an opportunity for delivering interventions during a rapidly changing opioid landscape. This paper describes pilot data and the protocol for a 2 × 2 factorial randomized controlled trial testing efficacy of early interventions to reduce escalation of opioid (prescription or illicit) misuse among at-risk AYAs. Interventions are delivered using technology by health coaches. AYAs ages 16–30 in the ED screening positive for prescription opioid use (+ ≥ 1 risk factor) or opioid misuse will be stratified by risk severity, sex, and age group. Participants will be randomly assigned to a condition at intake, either a live video health coach-delivered single session or a control condition of an enhanced usual care (EUC) community resource brochure. They are also randomly assigned to one of two post-intake conditions: health coach-delivered portal-like messaging via web portal over 30 days or EUC delivered at 30 days post-intake. Thus, the trial has four groups: health coach-delivered session+portal, health coach-delivered session+EUC, EUC + portal, and EUC + EUC. Outcomes will be measured at 3-, 6-, and 12-months. The primary outcome is opioid misuse based on a modified Alcohol Smoking and Substance Involvement Screening Test. Secondary outcomes include other opioid outcomes (e.g., days of opioid misuse, overdose risk behaviors), other substance misuse and consequences, and impaired driving. This study is innovative by testing the efficacy of feasible and scalable technology-enabled interventions to reduce and prevent opioid misuse and opioid use disorder.Trial Registration:ClinicalTrials.gov University of Michigan HUM00177625NCT Registration: NCT04550715

Systems-Level Change to Alleviate Barriers to Cancer Clinical Trial Access for Adolescents and Young Adults in Australia.

Purpose:International data demonstrate association between clinical trial participation and reduced cancer mortality. Adolescents and young adults (AYA) have low clinical trial enrollment rates. We established a program to understand local barriers and develop targeted solutions that lead to greater AYA clinical trial participation.Methods:A steering committee (SC) with expertise in adult and pediatric oncology, research ethics, and consumer representation was formed. The SC mapped barriers related to AYA trial access and established working groups (WGs) around three themes.Results:The Regulatory Awareness WG identified a lack of understanding of processes that support protocol approval for clinical trials across the AYA age range. A guideline to raise awareness was developed. The Access WG identified challenges for young adults (18–25 years) to access a pediatric hospital to enroll in a pediatric trial. A procedure was developed to streamline applications for access. The first six applications using this procedure have been successful. The Availability WG identified lack of pediatric–adult oncology reciprocal relationships as a barrier to awareness of open trials, and future collaboration. An AYA Craft Group Framework was established to grow relationships within tumor streams across institutions; two craft groups are now operating locally. An additional achievement was a successful request to the Therapeutic Goods Administration for Australian adoption of the Food and Drug Administration Guidance on Considerations for the Inclusion of Adolescent Patients in Adult Oncology Clinical Trials.Conclusion:This multipronged approach to improving AYA clinical trial access has relevance for other health environments. Our knowledge products are available as an online toolkit.

Impact of Race, Ethnicity, and Socioeconomic Status over Time on the Long-term Survival of Adolescent and Young Adult Hodgkin Lymphoma Survivors.

Although there are growing numbers of adolescent and young adult (AYA) Hodgkin lymphoma (HL) survivors, long-term overall survival (OS) patterns and disparities in this population are underreported. The aim of the current study was to assess the impact of race/ethnicity, socioeconomic status (SES), rurality, diagnosis age, sex, and HL stage over time on long-term survival in AYA HL survivors. The authors used the Surveillance, Epidemiology, and End Results (SEER) registry to identify survivors of HL diagnosed as AYAs (ages 15-39 years) between the years 1980 and 2009 and who were alive 5 years after diagnosis. An accelerated failure time model was used to estimate survival over time and compare survival between groups. There were 15,899 5-year survivors of AYA HL identified, with a median follow-up of 14.4 years and range up to 33.9 years from diagnosis. Non-Hispanic black survivors had inferior survival compared with non-Hispanic white survivors [survival time ratio (STR): 0.71, P = 0.002]. Male survivors, older age at diagnosis, those diagnosed at higher stages, and those living in areas of higher SES deprivation had unfavorable long-term survival. There was no evidence of racial or sex-based survival disparities changing over time. Racial, SES, and sex-based disparities persist well into survivorship among AYA HL survivors. Disparities in long-term survival among AYA HL survivors show no evidence of improving over time. Studies investigating specific factors associated with survival disparities are needed to identify opportunities for intervention.

Increased Toxicity Among Adolescents and Young Adults Treated for Acute Lymphoblastic Leukemia at U.S. Children's Hospitals

Introduction: Adolescent and Young Adult (AYA) patients with cancer are known to experience disparities in access to care along with delays in diagnosis and treatment. AYA patients with acute lymphoblastic leukemia (ALL) have poorer outcomes as compared to children with ALL. As a result, AYA patients with ALL are increasingly being treated in children's hospitals on pediatric protocols. However, minimal data exist regarding how well AYA patients tolerate the intensity of chemotherapy at doses and regimens designed for children. Our study aims to compare toxicities between pediatric and AYA populations treated for ALL in children's hospitals in the United States.Methods: With IRB approval, the Pediatric Health Information Systems (PHIS) database was queried to analyze healthcare outcomes in pediatric and AYA patients with ALL (ICD-9 code 204.00) admitted between January 1999 and December 2014. We chose to utilize the PHIS database, as these AYA patients with ALL were more likely to have been treated on pediatric protocols. AYA was defined as patients between the ages of 15 and 39 according to the National Cancer Institute (NCI) definition. We extracted relevant ICD-9 diagnoses and procedure codes for each patient related to grades 3 or 4 toxicities as outlined by the NCI, including: infections, cardiac, gastrointestinal, neurological, pulmonary, psychological, and renal complications, thrombosis, avascular necrosis, sepsis, and procedures performed. We focused primarily on various drug-related toxicities specific to therapeutic agents used in pediatric protocols. Admission age, sex, race, ICU stay, and mortality were also analyzed. Nominal data were described with percents and continuous data with medians . Nominal variables were compared using Chi squared analysis; continuous variables were compared using Wilcoxon rank sum tests. All statistical analyses were performed using SAS v. 9.4 (SAS Institute, Cary, NC).Results: A total of 18,095 admissions met inclusion criteria, representing 13,720 patients. Of these, 2,348 admissions (13.0%) were in the AYA age group. 10,896 patients (79%) had one admission and the remaining 2,824 (21%) had two or more admissions. 55% of children and 66% of AYA patients were male. AYA patients had a significantly higher incidence of ICU stay [16.3% vs 13.3%; p<0.0001], longer median length of hospital stay [9.0 vs 8.0 days; p=0.002], and increased mortality [3.9% vs 1.6%; p<0.0001]. The following table (Table 1) describes our key findings. The latter show statistically significant differences among the two groups, with AYA patients showing markedly increased toxicities.Conclusions: In this large multicenter database study, we found overall increased number of toxicities among AYA patients with ALL. Compared to children, AYA patients developed disproportionately higher toxicities from drugs commonly used in pediatric protocols for ALL. Prospective studies are needed to assess whether dose modifications for certain chemotherapeutics may improve the toxicity profile and health care burden of AYA patients with ALL treated in children's hospitals. [Display omitted] DisclosuresAhuja:Shire: Speakers Bureau; Shire: Honoraria; CSL Behring: Honoraria; Bayer: Honoraria.

Survival Among Acute Lymphocytic Leukemia Patients Conditional on Years Already Survived and Relative to the General Population in the United States

Background: Prognostic models for acute lymphocytic leukemia (ALL) patients (pts) become less meaningful and less accurate for ongoing cancer survivors. As a result, conditional survival (CS), which represents the probability that a cancer pt survives additional years (yrs), given that the pt has already survived a given number of yrs, has emerged as a more clinically relevant measure of prognosis for pts who have survived several yrs beyond diagnosis and treatment. Here we report population-level, 5-yr relative cancer survival probabilities conditional on having already survived ≥1 yr(s) after diagnosis in ALL cases diagnosed during 2000-2009, and followed through 2014.Methods: A total of 4,553 adult ALL cases were assembled from April 2017 release of all 18 registries of the Surveillance, Epidemiology and End Results (SEER). Pts who did not receive chemotherapy in the first 3 months after diagnosis were excluded. All survival estimates reported here refer to relative survival (RS), which is survival in the pt cohort relative to the expected survival of the general population (matched for age, sex, race and calendar period over a standard follow-up time). Survival probabilities were calculated using the SEER Survival System (SEER*Stat). Trends in 5-year RS estimates conditional on already having survived 0-5 years from diagnosis were modeled using regression modeling. Estimates were adjusted for age group [adolescents and young adults (AYA) (18-39 yrs); middle-aged (40-59 yrs) and elderly (> 60 yrs)], yr of diagnosis, years already survived (YAS), sex and race. We also performed subset analyses for following ALL morphologic categories - B-cell, T-cell and ALL of unknown lineage (UL). Tests of significance were based on two-sided hypothesis at the .05 level. All analyses were performed using STATA.Results: Figures 1A-1C show RS probability estimates for specific ALL categories by age subgroups - the 10-yr RS for T-cell ALL [40% - AYA, 27% - middle-aged, 15% - elderly], was not significantly different than that of B-cell ALL [40% - AYA, 25% - middle-aged, 14% - > 60 yrs] or ALL of UL. Overall, RS estimates were dismal for elderly age group for all three ALL categories. Figures 2D-2F illustrate the large influence of YAS on CS estimates. The estimated 5-year RS probabilities when conditioned on successive YAS increased for all age groups and for each of the ALL categories examined with the exception of ALL of UL in the > 60 age cohort. In the AYA age cohort, the CS converged to >90% in all ALL subtypes following 5 YAS. In the middle-aged cohort, the CS reached 90% in the ALL of UL subtype, 82% in the B-cell ALL subtype and 84% in the T-cell ALL subtype. Largest difference in CS estimates was seen in the elderly cohort with 5 YAS - similar for B-cell ALL and T-cell ALL (83% and 89%, respectively) but low at 65% for ALL of UL. In multivariable analyses, the 5-yr RS estimates were significantly lower in > 60 yrs cohort across all subtypes (vs. AYA, 19.09% drop (B-cell ALL) (95% CI, 18.20-19.98); 18.9% drop (T-cell ALL) (95% CI 18.12-19.68); 28.02% drop (ALL of UL) (95% CI 27.16-28.89)], males across B-cell ALL and T-cell ALL [ vs . females, 4.14% drop (B-cell ALL) (95% CI 3.75-4.52); 3.02% drop (T-cell ALL) (95% CI 2.67-3.37)], and blacks across B-cell ALL and T-cell ALL [ vs. whites, 13.35% drop (B-cell ALL) (95% CI, 12.25-14.45); 11.68% drop (T-cell ALL) (95% CI 10.86-12.50)], but showed improvement over time across all groups [2006-2009 vs 2000-2005, 12.02% improvement (B-cell ALL) (95% CI 12.35-12.89); 9.95% improvement (T-cell ALL) (95% CI 9.70-10.19); 4.81% improvement (ALL of UL) (95% CI (4.17-5.46)] and almost identical improvement with YAS across all subtypes [5 yrs vs. < 1 yr survived, 55.82% improvement (B-cell ALL) (95% CI 49.54-62.10)].Conclusions: Following treatment completion, survival prognosis in ALL can be further refined using a population-derived, 5-yr CS estimates based on YAS. While the AYA group had the best RS estimates compared to the older age cohorts, it was still low at 40% at 10-yr mark. RS estimates were not influenced by ALL subtype. With more number of yrs survived following diagnosis and treatment, probability of survival improved for all except for elderly with ALL of UL. RS and CS information can be applied clinically at the individual level and can be used in the design of clinical trials to determine appropriate length of follow up for more accurate survival analysis. [Display omitted] DisclosuresAdvani:Takeda/ Millenium: Research Funding; Pfizer: Consultancy. Gerds:Incyte: Consultancy; CTI BioPharma: Consultancy. Majhail:Sanofi: Honoraria; Anthem, Inc.: Consultancy. Sekeres:Celgene: Membership on an entity's Board of Directors or advisory committees.

537-P: Predictors of Engagement in Clinical Care: CoYoT1 to California

Background: Current type 1 diabetes (T1D) care models do not effectively engage racially and ethnically diverse Adolescents and Young Adults (AYA) indicating a need for new approaches. Objective: To assess clinical and demographic predictors of care engagement among diverse AYA with T1D. Methods: In an ongoing 15-month randomized controlled 2x2 trial with pragmatic care assignment, 53 AYA ages 16-25 received either quarterly usual T1D care (in-person or via telehealth (TH)), or CoYoT1 Care, which includes bimonthly T1D group sessions via TH and quarterly patient-centered care provider visits (in-person or via TH). Participant engagement was measured by the proportion of clinic visits attended out of all offered to date, per participant, including all currently enrolled. Predictors of engagement included: pre-trial clinic attendance, care group assignment (CoYoT1 or usual care), demographic, and clinical variables. All were entered into a multiple linear regression model, then reduced via stepwise regression. Results: Participation in CoYoT1 Care was associated with a 12% greater attendance rate (p=0.006) relative to usual care. Participants who retained their pre-trial care providers during the study attended clinic visits 7% more frequently than those randomized to a new provider (p=0.06). Participants’ who identified as African American (p=0.001) or Multi-racial (p=0.002) attended clinic visits at least 16% more frequently than participants from other groups; Latinx ethnicity was not associated with more or less frequent attendance. Females attended clinic visits 10% less frequently than non-females (p=0.006). Baseline A1c was also negatively associated with attendance rate, with each percentage increase in A1c associated with a 2% reduction in attendance rate (p=0.01). Conclusion: CoYoT1 Care successfully engaged patients from diverse backgrounds. The model warrants further investigation to identify which intervention components most promote engagement. Disclosure J. J. Flores garcia: None. J. Raymond: None. M. W. Reid: None. E. Pyatak: None. D. Fox: None. J. L. Fogel: None. E. Salcedo-rodriguez: None. D. I. Bisno: None. D. Miller: None. A. Mittal: None. Funding The Donaghue Foundation

Clinical and histological features in pediatric and adolescent/young adult patients with renal disease: a cross-sectional analysis of the Japan Renal Biopsy Registry (J-RBR).

Only a few studies have investigated epidemiological and clinicopathological information regarding pediatric and adolescent and young adult (AYA) patients with renal disease. The purpose of this study was to clarify the differences and relationship of clinicopathological findings between pediatric and AYA patients using the Japan Renal Biopsy Registry (J-RBR). This cross-sectional study analyzed data from patients registered in the J-RBR between 2007 and 2017. Clinicopathological findings at diagnosis were analyzed for 3,463 pediatric (age < 15years) and 6,532 AYA (age 15-30years) patients. Although chronic nephritic syndrome was the most common clinical diagnosis at age > 5years, nephrotic syndrome was the most frequent diagnosis at age < 4years. The most common pathological diagnosis as classified by pathogenesis in pediatric patients was primary glomerular disease (except IgA nephropathy), whereas IgA nephropathy was increased in AYA patients. Mesangial proliferative glomerulonephritis was the most common pathological diagnosis as classified by histopathology in both pediatric and AYA patients. Minor glomerular abnormalities were the most frequent histopathologic diagnoses of nephrotic syndrome in childhood, but their frequency decreased with age. To the best of our knowledge, this is the first report of clinicopathological features of pediatric and AYA patients in a large nationwide registry of renal biopsy. There were differences of clinical, pathological and histopathologic findings between pediatric and AYA patients.

Antiretroviral therapy outcomes among adolescents and young adults in a Tertiary Hospital in Kenya

Background: Limited data is available on the treatment outcomes of HIV infected adolescents and young adults (AYA) in sub-Saharan Africa. HIV-infected adolescents and young adults (AYA) are at high risk of developing antiretroviral treatment failure.&#x0D; Objective: To determine the clinical, immunological and virologic outcomes of AYA at a tertiary hospital in Kenya.&#x0D; Methodology: A longitudinal study was conducted among AYA age 10-24 years attending Kenyatta National Hospital comprehensive care center. Clinical data was abstracted from electronic medical records for study participants with at least 6 months of follow-up using a structured data abstraction sheet.&#x0D; Results: A total of 250 AYA age 10 to 24 years were included. The median age was 16 years. The median CD4 cell count was 650.6 cells/mm3 (IQR 350.7-884.0). More than half (60.6%) of AYA had a CD4 cell count higher than 500 cells/mm3. Overall, 76.9% of AYA had achieved viral suppression (viral load &lt;1000 copies/ml). There was a significant increase in virologic failure with higher age and late adolescents and young adults were more likely to have a viral load &gt; 1000 copies/ ml p&lt;0.012.&#x0D; Conclusion: The overall virologic suppression in this cohort of AYA was sub-optimal. Both immunological and virologic outcomes were worse among late adolescents (18-19 years) and young adults (20-24 years).&#x0D; Keywords: Adolescents; HIV; Kenya; virologic suppression; young adults.

Health Insurance Payer Type and Ethnicity Are Associated with Cancer Clinical Trial Enrollment Among Adolescents and Young Adults.

Purpose: Adolescents and young adults (AYAs) have experienced inferior improvements in cancer survival outcomes. One potential explanation is the low rate of enrollment in cancer clinical trials. While the reasons behind this are multifactual, sociodemographic factors are probably contributory. We examined the impact of factors such as insurance type and race/ethnicity on clinical trial enrollment among AYAs treated for cancer at an academic medical center. Methods: We identified AYAs (ages 15-39 years) treated for cancer at the University of North Carolina between April 2014 and April 2019. Cancer registry data were linked to electronic health record data to associate treatment and sociodemographic factors with clinical trial enrollment. A multivariable log-binomial model was used to estimate adjusted risk ratios. Results: In a 5-year period, 1574 AYA patients were identified, 59% female, 21% non-Hispanic Black and 9% Hispanic. Overall, 37% of AYAs participated in any clinical trial and 14% enrolled on a therapeutic trial. When compared to publicly insured AYAs, those with private insurance [adjusted RR: 1.52, 95% CI: 1.05-2.22] or with no insurance [adjusted RR: 2.12, 95% CI: 1.34-3.33] were more likely to enroll in a therapeutic clinical trial. Hispanic AYAs were less likely to enroll [adjusted RR: 0.50, 95% CI: 0.27-0.93] when compared to non-Hispanic White patients. Conclusions: Rates of clinical trial enrollment among AYAs vary based on health insurance type and race/ethnicity, suggesting possible disparities in access. Attention to resource, cultural, and language barriers may improve trial enrollment and cancer outcomes among vulnerable AYA subpopulations.

Clinical Trial Availability by Location for 1000 Simulated AYA Patients.

Purpose: Adolescent and young adult (AYA) oncology patients are less likely to enroll in clinical trials than pediatric patients. After two decades of effort to improve enrollments, challenges remain. We sought to explore where phase II and phase III trials are available for an AYA cohort.Methods: Based on the epidemiology of AYA cancers and outcomes, we assembled a simulated data set of 1000 patients (AYAsims). Available phase II and phase III trials were matched to diseases and treatment setting (relapsed or newly diagnosed) and characterized by sponsor (industry, National Clinical Trials Network [NCTN], investigator initiated) and location (Moffitt Cancer Center [MCC], community or pediatric).Results: The majority of AYAsims had potential first line (64.4%) and/or relapsed (68.1%) trials. The majority of these opportunities were industry-sponsored trials available at MCC. Phase II trials for relapsed cancer were most often at the MCC and more likely to be investigator-initiated trials. Trial availability for histologies varied widely, likely reflective of the overall epidemiology of cancers beyond the AYA age range. Pediatric hospitals offered trials for select cancers but had a trial portfolio that matched the fewest number of AYAsims.Conclusions: In general, newly diagnosed AYA patients have trial enrollment opportunities in both the community and comprehensive cancer center setting with select diagnoses having more trials in pediatric hospitals. Relapsed AYA patients have the most trial opportunities at a comprehensive cancer center. A facile system that navigates patients across health systems would maximize potential AYA trial enrollments.

Glioblastoma in adolescents and young adults: An age-based comparative study from Jordan over a 17-year period

BackgroundGlioblastoma (GBM) is the most common primary brain tumor. Epidemiologic studies on GBM are rarely reported in the special age group of adolescents and young adults (AYA) in comparison to other age groups. We aim to present data on GBM in Jordan, with a focus on the AYA age, including the incidence, gender, location and outcome, as well as long term survival (LTS). MethodsData on GBM was requested from the Jordan Cancer Registry (JCR), and statistical analysis was performed. All data were retrospective and anonymized. ResultsEight hundred GBM cases were analyzed from 2000 to 2016 including 505 males (63.1 %). Males outnumbered females across are studied years (p-value <0.001). There were 49 pediatrics (0−14 years, 6.1 %), 125 AYA (15−39 years, 15.6 %), 358 adults (40−59 years, 44.8 %) and 268 elderly (60+ years, 33.5 %) cases. Supratentorial location predominated across all age groups (p-value <0.001). The preponderance of males and supratentorial tumors remained across the AYA age group in comparison to others. The median overall survival (OS) was 23.61 months. AYA age group had a better outcome in comparison to the adults/elderly age group (p-value< 0.001). LTS appear to be more common in the AYA age group (p-value 0.021). ConclusionsThis is the first comparative epidemiologic study of GBM in Jordan, focusing on the AYA age group. The AYA age group appears to be associated with a better outcome compared to older age groups, with more LTS compared to others.

COVID-19 Vaccine Hesitancy Among Adolescent and Young Adult Cancer Survivors.

The study objective was to identify sociodemographic and coronavirus disease 2019 (COVID-19) factors that are associated with COVID-19 vaccine hesitancy among adolescent and young adult (AYA) cancer survivors. Eligible participants were 18 years or older and were diagnosed with cancer as an AYA (ages 15-39 years) and received services through an AYA cancer program. A total of 342 participants completed a cross-sectional survey. Our primary outcome—COVID-19 vaccine hesitancy—was surveyed as a 5-point Likert scale and operationalized as a binary outcome (agree vs hesitant). A large proportion of participants reported COVID-19 vaccine hesitancy (37.1%). In the multivariable regression, female survivors (odds ratio = 1.81, 95% confidence interval = 1.10 to 2.98) and survivors with a high school education or less (odds ratio = 3.15, 95% confidence interval = 1.41 to 7.04) reported higher odds of vaccine hesitancy compared with their male or college graduate or higher counterparts. COVID-19 vaccine hesitancy persists among AYA survivors despite their recommended priority vaccination status and higher chances of severe COVID-19 outcomes.

Otorhinolaryngologists/head and neck surgeons' knowledge, attitudes, and practices regarding fertility preservation in young cancer patients treated with chemotherapy: an anonymous questionnaire survey.

It is well known that chemotherapy for adolescent and young adult (AYA) patients with cancer can reduce fertility regardless of the regimen. A decline in fertility greatly affects the quality of life of cancer survivors in the AYA age group; however, few patients are thought to be receiving fertility preservation measures. A questionnaire survey was conducted to assess the current understanding and consideration of fertility among otorhinolaryngologists/head and neck surgeons who treat AYA patients with cancer, and to inform them of the guidelines for fertility preservation. A total of 275 otorhinolaryngologists/head and neck surgeons working at our hospital in Ehime, Japan, six neighboring universities, and their affiliated facilities were included in this study. The questionnaire was mailed and requested to be returned by fax. Twenty questions were asked about respondents' years of experience as physicians, specialties, experience in medical care and chemotherapy for AYA patients with cancer, and knowledge and experience in fertility reduction measures. Although 58.7% of the physicians were aware that cryopreservation of eggs and sperm prior to chemotherapy was recommended, only 7 out of 40 physicians (17.5%) had referred AYA patients with cancer to an appropriate medical facility (department) after obtaining informed consent for chemotherapy. Although fertility preservation has been discussed at professional conferences and seminars, consideration and actions in the field of otorhinolaryngology/head and neck surgery have not been sufficient. We hope that the results of this survey will help raise awareness of fertility preservation.