Adolescents And Young Adults Research Articles

Prevalence of cancer survivors diagnosed during adolescence and young adulthood in the United States.

Adolescent and young adult (AYA) cancer incidence rates are rising, and survivors are at risk for numerous cancer- and treatment-related consequences. Despite growing attention to this population, prevalence estimates are lacking. To estimate the number of individuals living in the United States with a history of cancer diagnosed during the AYA period. Prevalence of cancer survivors diagnosed between the ages of 15 and 39 years was estimated using data from the Surveillance, Epidemiology, and End Results (SEER) program as of January 1, 2020. Limited duration prevalence data were also used to generate complete prevalence by sex, years since diagnosis (0-<1, 1-<5, 5-<10, 10-<15, 15-<20, 20+), and attained age (15-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+) for the 15 most common AYA cancer sites. There were an estimated 2,111,838 survivors of AYA cancers in the United States as of January 1, 2020. More survivors were female (66%) and long-term (>5 years from diagnosis, 83%) or very long-term survivors (>10 years from diagnosis, 68.8%). A large percentage (44%) were more than 20 years from diagnosis. The most common cancer sites among females were breast (24%) and thyroid cancers (23%) and, among males, testicular cancer (31%). Across the population, the highest percentage of survivors of AYA cancers were 40- to 49-years of age (25.3%). There are over 2.1 million cancer survivors diagnosed in the AYA period who are living in the United States; most are more than 10 years from diagnosis.

Sustained Remission at long-term Follow-up in Adolescents and Young Adults with Chronic Primary Immune Thrombocytopenia.

Adolescents and young adults (AYAs) with immune thrombocytopenia (ITP) exhibit distinct clinical features and needs, defying categorization as either adults or children. Previous findings revealed a 50% risk of chronic disease at 12 months, yet the long-term course remains unclear. This study aimed to delineate the clinical and laboratory characteristics of AYAs with chronic primary ITP. Data from patients aged 12-25 years with chronic disease at 1 year were extracted from three registries (PARC-ITP, CEREVANCE, CARMEN), covering the period from 2004 to 2021. Sustained complete remission off treatment (SCROT) occurring beyond 12 months was defined as platelet count >100 × 109/L without treatment for at least 12 months, independently of the previous treatment strategy. A total of 427 AYAs (64% female) with chronic primary ITP were included. Clinical information was available for ~100% of patients at initial diagnosis, 6- and 12-month follow-ups, and for 88%, 77%, and 59% at 24, 36, and 48 months, respectively. Over time, clinical features improved gradually, with fewer patients requiring treatment. Throughout the follow-up period, second-line drug use increased steadily among treated patients, without impacting the need for corticosteroids and intravenous immunoglobulins. The proportion of new patients achieving SCROT at 24-, 36-, and 48-months FU was 10% (38/375), 9.5% (31/327), and 12% (30/250), respectively, including 23 who underwent splenectomy. AYAs achieving SCROT between 12-36 months displayed higher platelet counts in the first year (excluding the initial period) and received fewer intravenous immunoglobulin treatments beyond 12 months compared to those with ongoing disease.

Adolescent and Young Adult Development in Transplant Recipients.

Solid organ transplantation (SOT) is the gold standard of therapy for individuals with end-organ dysfunction. Improved survival outcomes after SOT can help adolescent and young adult (AYA) recipients lead long and healthy life. However, successful SOT during adolescence and young adulthood is often complicated by the innate developmental challenges of this age group. The psychosocial tasks of adolescence include identity development, autonomous decision-making, establishing social networks, educational and vocational preparation, and navigating romantic relationships. These goals may be amplified or delayed for pediatric SOT recipients. Adolescence is also marked by rapid physical changes in linear growth and the development of secondary sexual characteristics. Yet AYA may experience physical and pubertal delays related to transplantation, as well as exaggerated body image dissatisfaction due to medication side effects. Strict adherence to medication and post-transplant regimens may interfere with adolescents' desire for normalcy and fitting in with peers. Healthcare providers should be aware that AYA value education and self-empowerment in transplant care. Transplant success needs to be defined by both medical and psychosocial outcomes, particularly when it relates to the vulnerable AYA population. Fortunately, investment from the patient, family, and care team can aid in transplant recovery and success. This article will identify the developmental challenges faced by AYA undergoing solid organ transplantation as well as strategies to engage positive outcomes.

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

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

Insurance coverage for AYAs at cancer diagnosis: A claims-based analysis.

105 Background: Adolescents and Young Adults (AYAs), aged 15-39, experience unique challenges in cancer care. Frequent health insurance gaps for this population due to age, employment, and living changes hinder effective care and outcome assessments. Uninsured AYAs have lower survival rates, and insurance disparities are notable among Black, Hispanic, and rural patients; however, patterns of enrollment among AYAs have not been well described. Our study examined these patterns using insurance claims data to better inform AYA cancer care and outcomes. Methods: We conducted a retrospective cohort study with the Cancer Information and Population Health Resource (CIPHR), a linkage of cancer registry data and private and public payer data in North Carolina, including Medicaid and over 70% of the private insurance market. We included patients aged 15-39 diagnosed with common AYA cancers (leukemia, lymphoma, breast cancer, melanoma, sarcoma, germ cell tumors) from 2003-2019, linked to claims from 2003-2020. We analyzed insurance coverage patterns, comparing continuous enrollment 1) from two months pre-diagnosis to 12 months post-diagnosis and 2) from the month of diagnosis through 12 months. We compared demographics, clinical characteristics, and insurance types across scenarios. Results: The full cancer registry cohort included 21,060 AYAs; 11,024 (52.3%) had no link to Medicaid or private insurance in the year of cancer diagnosis. Continuous enrollment was 4,707 (22.4%) from two months prior through 12 months after, increasing to 5,912 (28.1%) for month of diagnosis through 12 months, particularly among Medicaid beneficiaries (from 10.8% to 15.6% of total cohort). Less restrictive criteria increased representation among Black (from 29.1% to 38.5%) and rural patients (from 25.2% to 33.1%) and those with leukemia (25.2% to 33.8%) and lymphoma (24.0% to 31.0%). Conclusions: AYAs face substantial hurdles with discontinuous insurance coverage around their cancer diagnosis. Claims-based research can characterize cancer care delivery, and use of less restrictive eligibility criteria expands the generalizability of findings to a more diverse cohort of AYAs. Increasing health insurance coverage over time may be due to the Affordable Care Act. Medicaid expansion within our state is likely to further improve access for AYAs. Continued efforts are essential to help AYAs with cancer secure necessary insurance coverage. Characteristics of AYAs by insurance enrollment criteria. Registry Cohort (n = 21,060) Continuous Enrollment –2 mos to 12 mos (n= 4,707) Continuous Enrollment 0 to 12 mos (n = 5,912) Cancer Type Breast 5817 1345 (23.1%) 1754 (30.2%) Sarcoma 1833 429 (23.4%) 532 (29.0%) Lymphoma 4436 1064 (24.0%) 1374 (31.0%) Leukemia 2393 604 (25.2%) 809 (33.8%) Race/Ethnicity Black 3951 1150 (29.1%) 1521 (38.5%) White 14620 3153 (21.6%) 3886 (26.6%) Hispanic 1296 164 (12.7%) 210 (16.2%) Location Urban 16277 Rural 4728 1190 (25.2%) 1565 (33.1%)

Financial toxicity and unmet social needs in adolescents and young adults (AYA) with cancer.

13 Background: Cancer incidence is rising in adolescents and young adults (AYA) (age 18-39), a population that faces durable financial challenges during and after treatment. Although AYA cancer survivors face unique risks for poor outcomes due to financial toxicity (FT), best practices for FT and social needs screening (i.e. food, housing, transportation insecurity) are unknown. Further, the relationship between FT and social needs is largely unexplored in AYA. Methods: A FT and social needs screening quality improvement project was conducted at a comprehensive cancer center. The Comprehensive Score for Financial Toxicity (COST) assessed FT, and patients reported unmet social needs and treatment payment methods. Quality of life (QOL) was assessed via a visual analog scale. Multivariate linear and logistic regression tested for associations with FT and unmet social needs, adjusting for demographic and clinical characteristics. Results: Of 70,983 requests, 38,249 patients completed the screening (54% response rate): 2,519 were AYA. Mean age of AYA was 33.7 years (SD 4.7), and most (65%) were non-Hispanic white. Disease sites included 41% breast, 20% gastrointestinal, and 19% gynecologic. Over one-half (54%) had active cancer treatment (chemotherapy, radiation, or surgery) within 120 days of assessment. Mean COST was 23.2 (SD 10.8; 0-44, with lower scores indicating worse FT), and 54% had COST &lt;26, suggesting FT. Racial/ethnic minority patients (β -4.37, p&lt;0.001) and those who had recent treatment (β -3.21, p&lt;0.001) had worse FT. Of those who screened positive for FT, only 44% accepted a referral for financial assistance. About one-quarter of the sample (28%) were unable to afford at least one social need, with 16% facing housing, 14% transportation, and 13% food insecurity. Patients who are a racial/ethnic minority (OR 2.98, 95% CI 2.35-3.79, p&lt;0.001) and those with metastatic disease (OR 2.45, 95% CI 1.10-5.45, p=0.028) were more likely to have at least one unmet social need. One-quarter of the sample (24%) used at least some of their savings to pay for treatment, with 7% reporting they did not have any savings. 25% borrowed money or took on new loans to pay for treatment: of those, 58% borrowed from friends/family. 10% did not have enough money for medications, and 7% took less medications than prescribed due to cost. Mean QOL was 7.3 [(SD 1.8) 0 “as bad as it can be”-10 “as good as it can be”]. Increased FT was associated with reduced QOL (β -0.10, p&lt;0.001), using more savings to pay for treatment (β 0.52, p&lt;0.001), and taking less medications due to cost (β 0.01, p&lt;0.001). Conclusions: Routine FT and social needs screening is feasible for AYA patients and uncovers high rates of FT and unmet social needs. Given lower QOL and decreased adherence to treatment associated with FT, future research should focus on interventions to support the specific needs of AYA and increase acceptance of financial assistance and navigation.

Patient engagement in a community-partnered hybrid health-related social needs navigation intervention for adolescents and young adults with cancer (AYA-NAV).

173 Background: Adolescent and young adult (AYAs) cancer survivors experience high rates of financial toxicity (FT), which is associated with poorer health outcomes. FT may disproportionately affect AYAs with unmet health-related social needs (HRSN), such as food or housing insecurity. Needs navigation may be an effective intervention to reduce financial distress, however, engagement has been a challenge in prior adult-directed interventions. We hypothesize that a hybrid navigation delivery model with community organization support and digital delivery will reduce financial distress and improve health outcomes. In a pilot study of AYA-NAV, an AYA-directed needs navigation intervention, we report patient engagement among participants. Methods: Eligible AYAs were 15-39 years old, Spanish- or English-speaking, receiving curative-intent treatment for cancer, and screened positive for FT (Comprehensive Score of Financial Toxicity &lt; 22) or unmet HRSN (food, housing, transportation, or utilities insecurity). Participants were referred for a consultation with the Patient Advocate Foundation (PAF), a national organization that provides case management and navigation support for people facing life limiting illness. At month 1, participants were referred to findhelp.org, a digital platform of comprehensive resources to facilitate resolution of unmet HRSN. Monthly check-ins were conducted by the study team to assess acceptability, intervention fidelity, and provide additional navigation support. We plan to enroll 30 participants on this study. Results: Of 19 AYAs that completed screening to date, 13 met criteria for FT or unmet HRSN; 13 (100%) agreed to AYA-NAV participation. To date, of 46 check-ins initiated by the study team, 33 (72%) were completed. All AYAs connected with the study team at least once during the 6-month duration of the study by text, phone, and/or in-clinic. Ten out of 13 (77%) participants reported that they spoke with a PAF case manager, and 7 (70%) of those said it was helpful. If the patient was unable to connect with PAF, more than half (55%) requested to be reconnected during a monthly check-in. Eight of the 13 (62%) participants visited findhelp.org; 6 (75%) of those found the digital platform to be helpful. Most patients referenced the high usability of findhelp.org, and 55% stated they connected to community resources via findhelp.org. Patients qualitatively reported challenges to intervention participation including medical complications, scheduling conflicts, and work commitments. Conclusions: Preliminary data demonstrate high patient engagement and intervention fidelity during a pilot feasibility study of AYA-NAV. Flexible modes for data collection and intervention delivery are important to inclusion of and retention of AYAs in hybrid navigation delivery models. Clinical trial information: NCT06072833 .

Transition readiness assessment in Portuguese adolescents and young adults with pediatric-onset rheumatic diseases: a single-center study

Objective: In this study, we aimed to assess the transition readiness levels amongst patients with childhood-onset rheumatic diseases. Additionally, we sought to identify and analyze predictive factors associated with better transi tion readiness skills in adolescent and young adult (AYAs) patients. Methods: This is a monocentric cross-sectional study that includes patients between 14 and 26 years of age who at tended outpatient pediatric and young adult rheumatology appointments between October and December of 2023 and that were diagnosed with an immune-mediated rheumatic disease before reaching 18 years of age, with at least 1 year of disease duration. Patients were presented with a questionnaire that contained demographic and clinical questions, TRACS (Questionário de Preparação da Transição para a Autonomia nos Cuidados de Saúde) question naire – a validated Portuguese version of the Transition Readiness Assessment Questionnaire (TRAQ), and Hospi tal Anxiety and Depression Scale (HADS) questionnaire. Data was analyzed to assess the significant associations between the different variables and transition readiness outcome measured by the TRACS. Descriptive statistics, statistical comparisons and logistic regression analysis were performed. Results: A total of 69 patients with a median age of 20 [17.5-22.5] were included in this study. The median TRACS score was 4.41 [4.09-4.74]. Significantly higher TRACS scores were observed in patients who were female, 18 years of age or older, had a higher level of education, were employed, had active disease or that belonged to middle-class (when compared to patients belonging to upper-middle class). The logistic regression analysis demonstrated that being a female or having an educational status equal to 12th grade or superior emerged as predictors of higher tran sition readiness levels. Conclusions: Our study identified female sex and higher level of education as predictors of increased transition readiness levels. Therefore, healthcare providers should consider these variables when assessing patients for transi tion readiness and focus on improving transition process, especially in male and less educated AYAs.

EASIX and m-EASIX predict CRS and ICANS in pediatric and AYA patients after CD19-CAR T-cell therapy

AbstractCytokine release syndrome (CRS) and immune effector cell–associated neurotoxicity syndrome (ICANS) are complications of CD19-directed chimeric antigen receptor (CD19-CAR) T-cell therapy. The Endothelial Activation and Stress Index (EASIX) and modified EASIX (m-EASIX) scores have been retrospectively proven to be predictive of CRS and ICANS in adult CAR T-cell recipients. However, these scores have not been evaluated in pediatric cohorts. We retrospectively report on 76 pediatric and adolescent and young adult (AYA) patients with relapsed/refractory B-cell acute lymphoblastic leukemia treated with CD19-CAR T cells at St. Jude Children’s Research Hospital or John’s Hopkins Hospital. Data included patient, disease, and treatment characteristics. EASIX and m-EASIX scores were calculated at days –5 before, 0, and +3 after CAR T-cell infusion. CRS and ICANS occurred in 47 and 17 patients, respectively. At all evaluated time points, the median EASIX scores were higher for patients who developed severe CRS and any grade ICANS, and the median m-EASIX scores were higher in patients who developed severe CRS and severe ICANS than those with no/mild CRS/ICANS. Receiver operating characteristic curve analysis showed that both scores were strong predictors of CRS, especially severe CRS, at all time points. Any grade and severe ICANS were best predicted by both scores at day +3. m-EASIX uniformly outperformed EASIX, except for predicting any grade ICANS. Our results validate the potential utility of EASIX and m-EASIX scores for predicting CAR T-cell–related complications for pediatric and AYA patients.

“Aiming at a moving target” – the daily life experiences of adolescents and young adults (AYA) with a low-grade glioma

“Aiming at a moving target” – the daily life experiences of adolescents and young adults (AYA) with a low-grade glioma

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.

Outcome of adolescents and young adult acute myeloid leukemia patients compared with middle-aged patients: A single centre retrospective experience

Adult acute myeloid leukemia (AML) patients under the age of 60 often receive similar intensive treatments, while outcomes between the adolescent and young adult (AYA) age group (18−39) and middle-aged adults (40–60 years) were seldom reported. We aim to study the characteristics and outcomes of AYA patients in comparison to middle-aged adults. A retrospective analysis was performed on AYA patients treated at Princess Margaret Cancer Center between 2008 and 2018. The primary outcomes include overall survival (OS), cumulative incidence of relapse (CIR), and non-relapse mortality (NRM).A total of 174 AYA patients and 176 middle-aged patients were included, with propensity score matching adjusting for potential major confounders. Comparing AYA and middle-aged patients, 5-year OS rates were similar at 54.6 % vs. 56.5 % (p=0.91), CIR rates at 29.5 % vs. 23.1 % (p=0.31), and similar NRM rates. Notably, non-transplanted AYA patients had a significantly higher CIR (39.8 %) compared to middle-aged patients (19.6 %) (p=0.0324), with more primary refractory/early relapsing disease. An observed trend toward improved OS in AYA patients post-2015 coincided with FLAG-IDA and haploidentical transplant implementations.In conclusion, the study suggests that AYA patients, particularly those not undergoing transplantation, may benefit from more intensive treatment strategies, emphasizing the need for tailored approaches in this age group.

Ten‐year follow‐up of outcomes, patterns of care, and psychosocial burden in adolescent and young adult patients with bone sarcomas from a large cohort in a low‐income and middle‐income country

AbstractBackgroundThe care of adolescents and young adults (AYAs) with bone sarcomas involves unique challenges. The objectives of this study were to identify challenges and evaluate long‐term outcomes of these patients from India who received treatment with novel protocols.MethodsThis prospective cohort study included AYA patients (aged 15–39 years) with osteosarcoma and Ewing sarcoma (ES), who were treated uniformly at the authors' institute using unique protocols (OGS‐12 and EFT‐2001) from 2011 to 2021 and from 2013 to 2018, respectively.ResultsThe cohorts included 688 of 748 (91.9%) treatment‐naive AYA patients with osteosarcoma and 126 of 142 (88.7%) treatment‐naive AYA patients with ES. Among 481 of 561 patients (85.7%) who had nonmetastatic osteosarcoma treated according to protocol, at a median follow‐up of 59.7 months, the 5‐year event‐free survival (5‐EFS) rate was 58.6% (95% confidence interval, 54.1%–63.5%) and for 142 patients (20.6%) who had metastatic osteosarcoma, the 5‐EFS rate was 18.7%. The 5‐EFS rate was 66.4% and 21.9% for 104 patients (73%) with nonmetastatic ES and 38 patients (27%) with metastatic ES, respectively. Treatment‐naive patients had better outcomes, similar to compliance in the form of protocol completion (hazard ratio, 1.93 [p = .0043] and 2.66 [p &lt; .0001], respectively. Only 230 of 377 (61.0%) male patients and 10 of 134 (7.4%) female patients reached out to fertility specialists. In addition, 17 of 161 (10.6%) eligible male survivors and 14 of 61 (22.9%) eligible female survivors got married posttreatment. Furthermore, 14 of 17 (82.4%) males and 14 of 14 (100%) females conceived. Among 311 patients who were working or attending school during diagnosis, greater than 90% had interruptions.ConclusionsHomogenous treatment with the OGS‐12 and EFT‐2001 protocols resulted in internationally comparable long‐term outcomes in the cohorts with nonmetastatic and metastatic AYA bone sarcomas. Treatment compliance, timely referral to sarcoma reference centers (avoiding prior inadvertent treatment), and streamlining fertility‐preservation practices constitute unmet needs that demand prioritization.

Adolescents and Young Adults With Respiratory Failure in U.S. PICUs: A Pediatric Health Information System Database Study, 2011–2022

Objectives: To examine the clinical characteristics, outcomes, and resource use of adolescents and young adults (AYAs) admitted to PICUs in the United States with respiratory failure. Design: Retrospective cohort study. Setting: De-identified data from 48 U.S. children’s hospitals contributing to the Pediatric Health Information System (PHIS) database. Patients: All patients older than 30 days old with respiratory failure, defined as encounters with clinical transaction codes for noninvasive or invasive mechanical ventilation, admitted to PHIS database PICUs from January 2011 to December 2022. Patients were categorized into five cohorts (&lt; 15, 15–18, 19–21, 22–25, and &gt; 25 yr old). Interventions: None. Measurements and Main Results: A total of 430,238 patients were identified. AYA (≥ 15 yr old) accounted for 15% (65,740) of all PICU admissions with respiratory failure. Forty-nine percent (32,232/65,740) of AYA older than 25 years had medical technology dependence compared with 39% in those younger than 15 years (p &lt; 0.001). Sixty-one percent of AYA older than 25 years had a cardiovascular comorbidity compared with 35% of those younger than 15 years (p &lt; 0.001). Forty percent of AYA older than 25 years had a neurologic comorbidity, and 27% a gastrointestinal comorbidity, compared with 27% and 31%, respectively, in those younger than 15 years (all p &lt; 0.001). Compared with those younger than 15 years, AYA median hospital crude mortality rate was higher at 7.7% compared with 5.2%, as were median hospital charges per encounter at $163K (interquartile range [IQR], $77K–$350K) vs. $121K (IQR, $53K–$278K; all p &lt; 0.001). Median ventilator days and hospital length of stay in survivors were similar for all age cohorts. Conclusions: AYA represent a substantial proportion of patients admitted to the PICU with respiratory failure. These individuals have unique comorbidities and are at risk for increased mortality and resource utilization compared with younger patients during hospitalization. Medical complexity and sequelae of pediatric illness may delay the transition of AYA to adult care, necessitating collaboration between adult and pediatric critical care physicians to increase research across the age spectrum and develop and implement appropriate evidence-based guidelines.

Evaluating the transition of adolescents and young adults with palliative care needs from pediatric to adult care

BackgroundThe transition from pediatric to adult healthcare poses significant challenges for adolescents and young adults (AYA), especially those with chronic conditions, yet most children receive inadequate transition preparation. Research on the transition for patients receiving palliative care services is particularly limited. We sought to address this gap in the literature. MethodsYoung adults aged 18 to 35 years who transitioned from the pediatric setting and received adult palliative care services at an urban academic medical center between the dates of February 1st, 2020 and July 1st, 2022 were identified retrospectively via electronic medical record. Chart review was used to investigate outcomes of interest, including use of pediatric palliative care services and timing of care conversations. ResultsOnly 23 % of patients interfaced with pediatric palliative care, despite all having childhood diagnoses. Pediatric palliative care exposure was associated with a significantly earlier median age of first adult palliative care encounter (19.63 versus 25.06, p = <0.001). Goals of care discussions, code status conversations, and healthcare proxy documentation occurred earlier if pediatric palliative care was involved (18.9 years versus 25.7 years, p < 0.001; 20.9 years versus 30.0 years, p < 0.001; 20.7 versus 28.9, p < 0.001). ConclusionsPediatric palliative care services were underutilized in AYA patients, but when used, were associated with earlier adult palliative care encounters, goals of care discussions, code status decisions, and health care proxy identification.

Stated preferences of adolescents and young adults for sexual and reproductive health services in Africa: a systematic review protocol

BackgroundAdolescence and young adulthood are critical life stages with varied healthcare needs. Adolescents and young adults (AYAs) are often confronted with challenges in their sexual and reproductive health (SRH) and...

CC-Connect: Identifying solutions to elevating the cancer experience for adolescents and young adults (AYA) with cancer.

Adolescents and young adults with cancer (AYAs, aged 15 to 39 years) experience unique challenges due to their developmental life stage, and many have limited access to support and resources. CC-Connect, the patient assistance component of the White House Cancer Moonshot CC-DIRECT initiative that aims to help childhood cancer families find the best care for their child, undertook a multipronged effort to identify key strategies for addressing the unique needs of AYAs with cancer. This paper describes the four strategies that emerged to form a comprehensive framework for addressing the unmet needs of AYAs with cancer, which can improve outcomes and enhance the cancer care experience for this vulnerable population.

COVID-19 Vaccination Among Adolescents and Young Adults: Test of the Triandis Model of Interpersonal Behavior and the Health Belief Model.

This study purpose was to test the Health Belief Model (HBM) and the Triandis Model of Interpersonal Behavior (TMIB) in predicting COVID-19 vaccine uptake among adolescents and young adults (AYAs). Data from an anonymous online survey were collected. Clusters of risk perceptions of infection were identified using Latent Class Analysis, and predictive values of TMIB and HBM factors were evaluated using logistic regression models. Response rate was 30% (468 participants). There was a combined significant effect of TMIB model components (habitual health behavior, intention, and facilitation conditions) on having received ≥1 dose of COVID-19 vaccine. Having received influenza vaccine in the past 12 months was associated with higher odds of COVID-19 vaccine uptake. Perceived vaccination benefits, and perceived risks of infection were associated with vaccine receipt; however, the HBM model performed inadequately. The HBM is commonly used in vaccine acceptance research; however, the TMIB may be more effective among AYAs.

A Patient-Centered Conceptual Model of AYA Cancer Survivorship Care Informed by a Qualitative Interview Study.

Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.

Perspectives of non-physician partners on barriers and facilitators to AYA cancer care in Latin America.

Cancer is the fourth leading cause of death in adolescents and young adults (AYA) worldwide. Although successful treatment of cancer in AYA has increased in recent years in most of the world, this is not true for many low- and middle-income countries (LMIC) where over 80% of all AYA live. This study investigated the needs of AYA with cancer in parts of Latin America (LATAM) through the perspectives of non-physician health care providers and partners. Semi-structured interviews (in Spanish) were conducted with non-physician partners from Mexico, Peru, Central America, and the Caribbean over Zoom. Participants were recruited through previously identified local physicians and international non-physician professionals working in these countries. Transcripts were coded and key themes identified until thematic saturation was reached (Atlas.ti). Thirty participants representing eight countries were interviewed, providing 1202 min of transcript data. Data were organized into barriers, facilitators, and strategies to improve the delivery of health care for AYA with cancer in LATAM at the patient- (e.g., financial barriers, continued schooling), parent- (e.g., limited medical literacy, advocacy), and hospital-level (e.g., structural barriers, increasing funding). There are many similarities in the barriers and facilitators to AYA care between LATAM and high-income countries (HIC); however, some characteristics are more unique to LATAM, for example, strict age restrictions for pediatric care and abandonment of therapy. As LATAM countries continue to build cancer control programs, there is an opportunity to consider our identified barriers, facilitators, and strategies to address the unique needs of AYA with cancer.