Qualitative insights into a digital CBT program for AYAs with cancer: Participant perceptions of factors impacting feasibility and engagement

The epidemiology of osteosarcoma in adolescents and young adults (AYA) remains unclear. We aimed to assess and compare the clinical features of osteosarcoma between AYA and other age groups. We retrieved osteosarcoma cases diagnosed between 1999 and 2017 from the Korea Central Cancer Registry. We compared survival trends and clinical characteristics between AYA and other age groups. AYA comprised 43.3% (1309/3022) of the osteosarcoma cases. Compared to other age groups, the male-to-female ratio was highest in AYA (1.61:1). The proportion of tumors located in an extremity was 80.3% in AYA, which was lower than in young children (92.5%) or pubertal children (93.8%) but higher than in adults (55.7%) or the elderly (47.5%). As for treatments, 71.2% of AYA received local treatment and systemic chemotherapy, and 28.8% received only local treatment (surgery: 261, radiotherapy: 9, surgery and radiotherapy: 5). The 5-year overall survival (OS) was lower in AYA (68%) than in young children (78%) or pubertal children (73%) but higher than in adults (47%) or the elderly (25%). When AYA were divided into five subgroups by age, patients aged 15–19 years constituted the largest proportion (45.4%, n = 594). Additionally, the proportion of patients with a non-extremity tumor increased in an age-dependent manner, from 10.3% in AYA aged 15–19 years to 35.3% in AYA aged 35–39 years. OS did not significantly differ among the different age subgroups of AYA. The clinical characteristics and OS of the AYA were more similar to those of children than to those of adults. There is a need for cooperation between pediatric and adult oncologists for effective osteosarcoma treatment in AYA.

Sickle cell disease (SCD) affects millions globally, with pain being the most prevalent symptom. Adolescents and young adults (AYAs) with SCD face high rates of pain crises and healthcare encounters. Digital cognitive behavioral therapy (CBT) shows promise for pain management but faces engagement challenges. The PRESENCE study aims to enhance engagement in and benefit from digital CBT for SCD by adding personalized peer support. This multisite, randomized controlled trial is recruiting 470 AYAs (ages 16-30) with SCD who report chronic pain. Participants are randomized 3:3:2 respectively to one of three groups: (1) CBT with peer support (CBT + Peer), (2) CBT alone (CBT), or (3) usual care (UC). Participants are provided access to the study mobile application, which is used for intervention delivery and data collection. Peer support is provided weekly by trained peer coaches who are individuals with lived experience. Evaluations are completed at baseline, 3, 6, and 12months post randomization. The primary study aim is to determine whether AYAs receiving any digital CBT have greater reductions in pain intensity and pain interference at 6months post randomization compared to those receiving UC. The secondary aim is to determine whether CBT + Peer is superior to CBT in reducing pain intensity and interference at 6months. Secondary outcomes include reductions in mean daily pain intensity, pain days, average weekly opioid dose, emergency department visits, healthcare utilization, internalized stigma, and depression and anxiety symptoms, and improvements in sickle cell self-efficacy. Findings from the PRESENCE trial will inform patients, parents, and providers on how digital CBT and peer support will improve pain management. Ultimately, this study will advance our understanding of how digital interventions can be optimized for populations with complex chronic conditions like SCD, where stigma and healthcare navigation can be barriers to effective care delivery. This approach could offer a scalable, accessible, and culturally responsive strategy to improve pain outcomes, reduce opioid reliance, and enhance overall health and well-being for AYAs with SCD. Clinicaltrials.gov NCT06374238.Registered on April 2025.

Background The transition from adolescence to adulthood in individuals with sickle cell disease (SCD) is a time of high risk for both acute and chronic pain, contributing to poor physical and mental health outcomes. Digital cognitive behavioral therapy (CBT) is a promising non-pharmacological treatment for treating pain and enhancing pain-related coping skills. However, it remains underutilized in SCD care due to clinician and patient unfamiliarity, the need for long-term patient engagement with digital CBT, and lack of knowledge on efficacy as well as how best to integrate this scalable technology into routine clinical care. The NIH-funded PRESENCE Trial aims to determine the effectiveness of a digital CBT program at improving chronic pain outcomes among adolescents and young adults (AYA) with SCD, and whether peer support from health coaches with lived experience with SCD can promote engagement with digital CBT. Methods PRESENCE is recruiting 470 AYAs with SCD reporting chronic pain who present for care at academically affiliated SCD specialty clinics at academic healthcare institutions located across the United States, from SCD community-based organizations, and virtually using online advertising and outreach. Eligibility criteria include: 1) age 16-30years; 2) SCD diagnosis; 3) experience 4 or more days of chronic pain for the past 3months, and/or taking or prescribed pain medication 4 or more days for the past 3 months. Exclusion criteria are: 1) cannot read/speak English; 2) do not have access to a mobile phone/device; 3) prior hematopoietic stem cell transplant; or 4) report active suicidality. Protocol-eligible and consenting patients are randomized 3:3:2 ratio to either: 1) digital CBT with peer support (CBT+peer); 2) digital CBT alone (CBT); or 3) usual care (UC). All participants are provided access to our PRESENCE mobile app which enables them to record brief reports on their pain, mood, and medication use. For those randomized to our CBT+peer and CBT arms, the PRESENCE mobile app also provide access to CaRISMA, a 12-week digital CBT intervention for SCD patients we developed and proved effective in a previous study. Those randomized to CBT+peer also receive peer support from trained peer coaches living with SCD, who help participants develop a personalized plan focused on symptom awareness and management, monitor participant progress with CaRISMA, and promote patient engagement with the program. The primary outcomes of PRESENCE are to determine whether digital CBT is superior to UC at improving pain intensity and interference at 6 months following randomization, and secondary outcomes will evaluate CBT+peer versus CBT. Other outcomes include mean daily pain intensity, pain days, average weekly opioid dose, emergency department visits, healthcare utilization, internalized stigma, self-efficacy, depression, and anxiety symptoms for up to 12-months follow-up. Participants also complete within-app entries on pain, mood, and medication use for at least 3 days during week-long data collection periods after randomization, and at 3, 6, and 12 months. Subgroup analyses will test for differences in effect among age and sex, as well as any baseline variables with large clinically meaningful between-group variability. Results Enrollment began in March 2025, and we anticipate we will reach our 470 target sample in July 2027. Conclusions The PRESENCE Trial addresses a critical need for effective, accessible non-opioid pain management interventions for AYAs with SCD. The study evaluates the potential of digital CBT with or without peer support to reduce chronic pain in SCD by utilizing an accessible and available mobile technology to support pain treatment, with the goal of reducing the need for potentially harmful treatments such as chronic opiates. If our hypotheses are supported, we also anticipate PRESENCE will raise awareness and use of digital CBT by patients and providers nationally. Figure 1PRESENCE app launch screen, eDiary, pain level, and video library examplesThe image above represents multiple screenshots of example tasks that a user would see when they gain access to the PRESENCE mobile app.

619-P: Understanding Parental Influences on T1D Incorporation in Adolescents and Young Adults

Adolescent and Young Adult (AYA) Hematopoietic Cell Transplantation (HCT) Recipients Have Similar Quality of Life (QoL) Compared to Older Adults in the First Year Post-Transplantation

Patient-provider communication in nephrology care for adolescents and young adults

Outcome in Adolescent and Young Adult (AYA) Patients Compared to Younger Patients Treated for High-Risk B-Lymphoblastic Leukemia (HR B-ALL): Report from the Children's Oncology Group Study AALL0232

Treatment decision-making in adolescents and young adults (AYAs) requires preference consideration and tradeoffs. Using MyPref, an adaptive conjoint analysis tool, we examined and compared the decision-making and treatment preferences of both AYAs and their parent or other trusted person (PTP). AYAs aged 15-30with advanced cancer independently completed MyPref, including demographic questions, the Control Preference Scale, and the adaptive conjoint analysis survey. AYAs could invite a PTP to participate. Participants received a personalized MyPref Summary Report quantifying their preference for nine treatment attributes. Preference scores were summarized and compared by participant group, AYA age, sex, cancer diagnosis, and distance from the hospital. We enrolled 50 AYAs, 15 of whom selected a PTP to participate. Most AYAs identified as male (64%), White, non-Hispanic (84%), and had solid tumors (48%). The majority (80%) of PTPs identified as the AYA's mother. AYAs favored participant-led decision-making, while PTPs preferred a shared approach. Treatment attributes with the highest preference scores included time until cancer grows, quality of life, and side effects. Compared to PTPs, AYAs had lower preference scores for quality of life. Older AYAs ( years) placed more emphasis on the time until cancer grows, whereas younger AYAs prioritized clinic visit frequency. AYAs with advanced cancer exhibit diverse preferences for decision-making roles and treatment factors. Despite differences, participants valued longer time until cancer progression and quality of life. Future research should explore how preferences of AYAs and their PTPs change over time and optimal strategies for initiating preference discussions earlier in the illness course.

Adolescents and young adults (AYA) have poorer retention, viral suppression, and survival than other age groups. We evaluated correlates of initial AYA engagement in HIV care at facilities participating in a randomized trial in Kenya. Retrospective cohort study. Electronic medical records from AYA ages 10-24 attending 24 HIV care facilities in Kenya were abstracted. Facility surveys assessed provider trainings and services. HIV provider surveys assessed AYA training and work experience. Engagement in care was defined as return for first follow-up visit within 3 months among newly enrolled or recently re-engaged (returning after >3 months out of care) AYA. Multilevel regression estimated risk ratios and 95% confidence intervals (CIs), accounting for clustering by facility. Final models adjusted for AYA individual age and median AYA age and number enrolled per facility. Among 3662 AYA records at first eligible visit, most were female (75.1%), older (20-24 years: 54.5%), and on antiretroviral therapy (79.5%). Overall, 2639 AYA returned for care (72.1%) after enrollment or re-engagement visit. Engagement in care among AYA was significantly higher at facilities offering provider training in adolescent-friendly care (85.5 vs. 67.7%; adjusted risk ratio (aRR) 1.11, 95% CI: 1.01-1.22) and that used the Kenyan government's AYA care checklist (88.9 vs. 69.2%; aRR 1.14, 95% CI: 1.06-1.23). Engagement was also significantly higher at facilities where providers reported being trained in AYA HIV care (aRR 1.56, 95% CI: 1.13-2.16). Adolescent-specific health provider training and tools may improve quality of care and subsequent AYA engagement. Health provider interventions are needed to achieve the '95-95-95' targets for AYA.

Adolescents and young adults (AYA) face disproportionately worse outcomes along the HIV prevention and care continuum. Despite global commitments to AYA engagement, AYA remain underrepresented in research, programming, and policy development. We summarize recent innovations in AYA engagement within the HIV literature and reflect on the 2023 Blueprint Collaborative, a UNICEF/WHO/UNAIDS initiative where AYA (ages 10-30) shaped global adolescent HIV strategy. Our review found examples of AYA engagement across the intervention life cycle, including in shaping research agendas, designing interventions, and building AYA capacity for sustainability. For the Blueprint Collaborative, which featured a AYA-led evidence synthesis and global open call, we assessed AYA engagement using the RIGHTS framework. A major strength of the Blueprint Collaborative was the robust AYA engagement, moving beyond AYA consultations to AYA leadership. AYA shared decision-making authority with adults as researchers, organizers, and open call judges. Through a "learning by doing" approach, AYA gained skills in research and multidisciplinary collaboration. Blueprint results were presented to senior leadership, developed into strategy, and disseminated through publications and AYA networks. AYA leadership can provide several benefits for AYA research and programming, such as institutionalizing community engagement, improving research relevance, and advancing equity. AYA are eager and capable of driving HIV strategy and policy, but senior partners should step back to enable these opportunities. Senior partners might better serve to support AYA leadership in strategic planning to align programming with AYA priorities and build research and advocacy skills.

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

BackgroundIn 2017, 21% of new HIV diagnoses occurred in AYAs (ages 13-24), disproportionately among black and Hispanic men who have sex with men (MSM). However, only 0.1-1.5% and 9.5-15.4% of national PrEP prescriptions have been provided to AYAs under 18 and 24, respectively, with a white male majority. In 2018, PrEP was approved for use in adolescents weighing more than 35kg. However, limited studies on attitudes of AYA providers suggest lack of familiarity of PrEP and concerns about adherence, safety, confidentiality, and cost have led to a slow uptake among AYAs. Here we describe the AYA PrEP prescription rates at Rutgers New Jersey Medical School (NJMS) in two unique practices, the Infectious Disease Practice (IDP) and Division of Adolescent and Young Adult Medicine (DAYAM).MethodsMedical records were queried for patients prescribed Truvada for PrEP at NJMS from 2017-2019 to assess the specialty-specific prescription rates and demographics of AYAs on PrEP.ResultsOf the 273 patients who were prescribed PrEP from 2017-2019, 2.2% (n=6) and 20.5% (n=56) were under 18 and 24, respectively. IDP and DAYAM respectively prescribed PrEP to 62.5% (n=35) and 33.9% (n=19) of AYAs. Among all AYAs on PrEP, 71.4% were black, 21.4% Hispanic, 19.6% transgender women (TGW), and 85.7% MSM or TGW who have sex with men. Most (73.7%) AYAs at DAYAM received PrEP from their primary care providers (PCP) compared to only 5.7% at IDP.Table 1. Department-specific characteristics of (A) patients of all ages and (B) AYAs prescribed PrEP at NJMS between 2017-2019, n (%).Fig. 1-3. Annual percentage of (1) patients receiving PrEP at NJMS by age group and (2) AYAs receiving PrEP by department, and (3) percentage of AYAs prescribed PrEP by their PCP, 2017-2019.Fig. 4. Percentage of AYAs prescribed PrEP at NJMS between 2017-2019 by (A) race, (B) gender identity, and (C) HIV transmission risk factor, % (n).ConclusionAYA PrEP prescription rates at NJMS were higher than national estimates, primarily driven by IDP and DAYAM, in contrast to national data identifying emergency, family and internal medicine providers as common AYA PrEP prescribers. Compared to national data, our AYAs on PrEP better reflected the national PrEP indications by race and HIV risk factor (although intravenous drug use was not identified as a PrEP indication in our study presumably due to a lack of forthcomingness). IDP and DAYAM routinely identify high risk AYAs, screen for PrEP eligibility using detailed, nonjudgmental sexual histories, and prescribe PrEP to AYAs. It is thus important to integrate primary care into subspecialty clinics with an emphasis on including PrEP in routine sexual/reproductive health services. PCPs in other fields should expand AYA PrEP prescriptions to further engage high risk youth in HIV prevention.DisclosuresAll Authors: No reported disclosures

The Evaluation of Medical Mistrust in Adolescents and Young Adults (AYAs) with Leukemia and Lymphoma: A Preliminary Report

Inflammatory bowel diseases (IBD) often begins early in life. Adolescents and young adults (AYA) with IBD have to acquire behaviors that support self-care, effective healthcare decision-making, and self-advocacy to successfully transition from pediatric to adult health care. Despite the importance of this critical time period, limited empirical study of factors associated with transition readiness in AYA exists. This study aimed to describe transition readiness in a sample of AYA with IBD and identify associated modifiable and nonmodifiable factors. Seventy-five AYA (ages 16-20) and their parents participated. AYA and parents reported on demographics, patient-provider transition-related communication, and transition readiness. AYA self-reported on disease self-efficacy. Disease information was abstracted from the medical record. Deficits in AYA responsibility were found in knowledge of insurance coverage, scheduling appointments, and ordering medication refills. Older AYA age, higher AYA disease-management self-efficacy, and increased patient-provider transition communication were each associated with higher overall transition readiness and AYA responsibility scores. Regression analyses revealed that older AYA age and increased patient-provider transition-related communication were the most salient predictors of AYA responsibility for disease management and overall transition readiness across parent and AYA reports. AYA with IBD show deficits in responsibility for their disease management that have the potential to affect their self-management skills. Findings suggest provider communication is particularly important in promoting transition readiness. Additionally, it may be beneficial to wait to transition patients until they are older to allow them more time to master skills necessary to responsibly manage their own healthcare.

Background: Neoadjuvant chemotherapy (NACT) is the standard early-stage triple-negative breast cancer (TNBC) treatment. Achieving pathological complete response (pCR) is considered an essential prognostic factor with favorable long-term outcomes. Younger patients have with poorer prognosis in breast cancer. To date, few studies are comparing the prognosis of AYA and older women (≥40) with breast cancer subtypes, specifically Triple-negative breast cancer (TNBC), as AYAs had higher proportions of this subtype. Method: Retrospective review was performed on female patients who received NACT at a King Hussien Cancer Center from January 2014 to June 2020. Data were collected from patients’ electronic medical records. TNBC was histopathologically confirmed. Logistic regression analysis of predictors of pathologic complete response (pCR). Survival curves were estimated with the Kaplan-Meier method. Multivariate analysis for EFS was performed using Cox’s proportional hazards regression model, covariates included age at diagnosis (AYA vs. ≥40), tumor size, nodal status LVI and pCR Result: We analyzed 211 women with stage I-III TNBC, including 62 (29.4%) women aged 18 to 39 years (AYA) and 149 (70.6%) ≥40 years. 138 (68.3%) were node positive, and 71 (34.8%) were T3/4 disease. Median follow-up was 28.1 months, median number of ER visit during NAC is 1 (0-11), 23 (10.9 %) patients had admission during neoadjuvant chemotherapy, most commonly due to febrile neutropenia 13 (56.9%). 37 (17.5%) patients did not complete NAC, due to disease progression in 22 (10.4%), and toxicity in 15 (7.1%) patients. 195 (92.4%) patients had surgery, including 75 (35.5%) had breast-conserving surgery (BCS). 166 (76.3%) patients had objective response, and 64 (30.3%) had pCR. 170 (80.6%) received adjuvant radiotherapy, and 38 (18%) received adjuvant capecitabine. No significant differences between the AYA and the ≥40 group in terms of clinicopathological, toxicity, pCR rate, and the rate of BCS. In univariate analysis, the LVI, nodal status, pCR, and age group were significant predictors of DFS. In multivariate analysis, only PCR and age are the only independent predictor of DFS. The median DFS was worse in the AYA population 47.8 (31.21-64.39) months vs. NR in ≥40 (p-value 0.013). In patients who achieved pCR, the estimated 5-years DFS for the AYA group was 56.1% versus 86.8% for the ≥40 group, (p-value 0.71). In patients with residual disease, PFS for AYA was 34.2 (95%CI 11.5-57) months vs. 59.5 months in the ≥40 group, (p 0.009). Conclusion: Although there is no difference in pCR between the AYA age group patient treated with NACT for TNBC and the older age group, the DFS is significantly worse in the AYA than the ≥40 age group in patients with residual disease. As well, DFS is numerically worse in the AYA age vs. the ≥40 age group in patients who achieved pCR. Citation Format: Faris Tamimi, Baha’ Sharaf, Suhaib Khater, Suhaib Al-Sawajneh, Malek Horani, Khalid M. Elrabii, Anas Zayed, Hikmat Abdel-Razeq. Neoadjuvant B27 protocol in Triple-Negative Breast Cancer: Evaluation response rate, pathological complete response rates,toxicity,and the prognosis of Adolescent and Young Adult (AYA) age group compared to older population [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-06-06.