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Background: Walnuts contain nutrients and phytochemicals that can promote metabolic health. However, the high energy content of walnuts along with other nuts raises the concern that consuming nuts promotes obesity. Objectives: We sought to investigate the associations between consumption of walnuts as well as other nuts and measures of obesity in adolescents and young adults. Methods: This study included 8874 adolescents (12–19 y) and 10,323 young adults (20–39 y) from 8 waves of National Health and Nutrition Examination Survey data (2003–2020). The associations of consumption of 1) walnuts only (WO); 2) walnuts with other nuts (WON); 3) other nuts (ON); and 4) no nuts (NN) with obesity status and relative fat mass (RFM) were assessed using logistic and linear regressions stratified by age group and sex. Sample weights were used in all statistical analyses. Results: The mean daily intake of walnuts was not different between the 2 walnut consumption groups within each age group (adolescents: 2.18 [standard error (SE) 0.14] g; P = 0.917; young adults: 4.23 [0.37] g; P = 0.682). The WON group had the lowest prevalence of obesity (adolescents: 8.3%; young adults: 21.1%) while the NN group had the highest prevalence (adolescents: 24.1%; young adults: 35.4%). The models indicated lower odds of obesity in adolescent girls (odds ratio [OR]: 0.27; P < 0.05) and young adult women (OR: 0.58; P < 0.05) who consumed WON than in those who consumed NN. In both young women and girls, RFM was significantly lower in the WON and ON groups than the NN group (P < 0.001). In young men, WON consumption was also associated with a lower RFM (OR: −1.24; 95% confidence interval: −2.21, −0.28) compared with NN consumption. Conclusions: For adolescents girls and young women, dietary intake of walnuts combined with other nuts has the strongest inverse association with measures of obesity.

In this retrospective cohort study examining 13,763,447 patients with 16 different malignancies, including 1,232,841 patients with five gynecologic malignancies (uterus [n = 690,590], ovary [n = 276,812], cervix [n = 166,779], vulva [n = 81,575], and vagina [n = 17,085]), identified in the Commission-on-Cancer’s National Cancer Database from 2004 to 2020, cervical cancer (25.3 %) had the highest rate of adolescent and young adult (AYA) patients among 27 gender-stratified cancer groups (25.3%). There were 8 groups that the annual rates of AYA patients statistically increased during the study period at a P

Background: Enhancing family readiness for the healthcare transition (HCT) to adult-focused care can help adolescents and young adults (AYA) thrive in adulthood. We aimed to explore modifiable and non-modifiable individual, family, and healthcare factors associated with HCT readiness of AYA among families of AYA with cystic fibrosis (CF) during COVID-19. Methods: A multi-site, cross-sectional design was used and an online survey was deployed among families and their AYA from three US pediatric CF centers. The STARx Transition Readiness Questionnaire assessed caregiver- and AYA-perceived HCT readiness of AYA. Results: Caregivers (N = 71) and their AYA with CF (N = 33, aged 12–21 years) perceived moderately high HCT readiness of AYA. Caregiver resilience was a significant (p = 0.006), family-level factor correlated with caregiver-perceived HCT readiness. Conclusions: Families perceived similar levels of AYA readiness for adult-focused care. Caregiver resilience is an important, modifiable family-level factor for targeted interdisciplinary interventions aimed at enhancing HCT processes during COVID-19.

Objective: Assessing the perceived social support (PSS) that adolescents and young adults (AYAs) with cancer receive from family, friends, and healthcare providers is critical to promoting their adjustment. This study developed a reliable and comprehensive self-report PSS assessment tool that measures various aspects of social support by translating existing measurements into Korean. Methods: The translation was completed in accordance with international guidelines. To focus on cultural adaptation, the main ideas associated with items were translated to reflect the differences between Western and Eastern culture. In total, 144 Korean AYAs with cancer (mean age: 17.0 years; 45.8% female) completed the translated version. A separate principal component analysis (PCA) with an orthogonal quartimax rotation, a minimum eigenvalue of 1.0, and minimum factor loadings of 0.50 was used for each subscale. Cronbach's alpha coefficients were calculated for each PCA-derived subscale. Results: Four subscales with 46 items were identified. Two subscales represented perceived emotional support within the family (PSS-ESF, 14 items) and the AYA's perceived helpfulness within the family (PSS-HWF, 3 items). The third scale represented the perceived support of friends (PSS-Friends, 14 items). The final scale represented the perceived support of healthcare providers (PSS-HCPs, 15 items). Excellent reliability per subscale was demonstrated (Cronbach's alpha: 0.93 for PSS-ESF, 0.73 for PSS-HWF, and 0.92 each for PSS-Friends and PSS-HCPs). Conclusions: A culturally adapted and reliable Korean version questionnaire with four independent subscales was developed. Further assessment of the Korean PSS is required and will contribute to the development of culturally adapted and tailored interventions.

The “Roundtable on Young Adults with Inflammatory Bowel Diseases (IBD)” is a year-long learning community organized by the Crohn’s and Colitis Young Adults Network with monthly discussions between healthcare professionals, patients, and community-based partners. The group aims to improve outcomes for the young adult IBD patient population. The roundtable discussion highlighted in this article centered on the critical importance of peer support for adolescents and young adults (AYA) with IBD. The discussion underscored the need for increased research in peer support, the need to further consider peer support as an intervention, and the value of multi-stakeholder, peer-led collaboration in reducing isolation for young adults with IBD. Additionally, the group identified areas of opportunity, such as developing more appropriate metrics and scales to prove the inherent value of peer support for young adults with IBD.

In this retrospective cohort study examining 13,763,447 patients with 16 different malignancies, including 1,232,841 patients with five gynecologic malignancies (uterus [ n  = 690,590], ovary [ n  = 276,812], cervix [ n  = 166,779], vulva [ n  = 81,575], and vagina [ n  = 17,085]), identified in the Commission-on-Cancer's National Cancer Database from 2004 to 2020, cervical cancer (25.3 %) had the highest rate of adolescent and young adult (AYA) patients among 27 gender-stratified cancer groups (25.3%). There were 8 groups that the annual rates of AYA patients statistically increased during the study period at a P  < .05 level, of which 7 (87.5 %) groups were for female malignancies. Among these 7 female malignancies, the annual percentage rate increase in AYA patients was largest for colorectal cancer (4.1 %, 95 % confidence interval 3.6-4.6), followed by malignancies in the ovary (3.1 %, 95 % confidence interval 1.6-4.5 in 2014-2020), pancreas (2.1 %, 95 % confidence interval 1.0-3.2), uterus (1.2 %, 95 % confidence interval 0.3-2.0 in 2013-2020), breast (0.8 %, 95 % confidence interval 0.2-1.4 in 2012-2020), cervix (0.8 %, 95 % confidence interval 0.2-1.5 in 2011-2020), and kidney (0.4 %, 95 % confidence interval 0.1-0.9). In conclusion, these data suggested that proportion of cancers attributable to AYA patients is increasing in several obesity-related female malignancies and in the three most common gynecologic malignancies., Competing Interests: All were unrelated to the work: consultant, Cardiff Oncology, Nutcracker, participation in the Steering Committee for the Global Coalition of Adaptive Research (L.D.R.); research grant, Merck, royalties, UpToDate (J.D.W.); none for other investigators., (© 2024 The Author(s).)

Background: While Chronic Myeloid Leukemia (CML) is a disease of older adults, there is a growing population of adolescent and young adults (AYAs) with CML. This study evaluated the clinical characteristics and outcomes of CML in AYAs., Patients and Methods: Data from medical records of adults with chronic phase CML diagnosed and treated at our center from 2011until 2021were retrospectively analyzed. Age between 18 and 29 years was used to define AYAs. Response to tyrosine kinase inhibitors (TKIs), progression to accelerated phase (AP) or blast crisis (BC), event-free survival (EFS) and overall survival (OS) were compared between AYAs and older adults., Results: Among 163 patients included, 41 (25.1%) were AYAs. AYAs were more likely to be males (P = .02), to present with symptoms (P = .004), had a higher median white blood cell count (P = .007), neutrophil count (P = .029), eosinophil count (P = 0.01), low-risk Sokal (P = .033) and Hasford (P = .005) groups. TKI-sensitivity as well as median times for achievement of complete cytogenetic and major molecular response were comparable between both groups. After a median follow-up of 76 (range: 11-235) months, there was no difference in OS (P = .528), or cumulative incidence of transformation to accelerated phase or blast crisis (P = .11). On the other hand, AYA had an inferior EFS (P = .034)., Conclusion: A quarter of the patients diagnosed with CML in our population were AYAs. Despite being characterized as "lower-risk," they presented with a greater disease burden, had a shorter EFS but comparable OS. Further studies are needed to better understand the disease biology of this group., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Purpose: Inadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition., Methods: We conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved., Results: 18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs' changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning., Conclusions: This study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents' desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents' challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs' skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.)

Background: Treating adolescents and young adults (AYA) patients with acute lymphoblastic leukemia (ALL) using pediatric-inspired protocols have shown improvement in outcomes. Most data available in the literature of such protocols is derived from well-controlled clinical trials. This report aims to provide a real-world experience from using a pediatric-inspired protocol in ALL-AYA population in larger number of patients treated at a national tertiary care referral center. Methods: Newly diagnosed Philadelphia negative ALL-AYA patients ages between 14 and 55 years of age were treated on an institutional protocol (AYA-15 protocol) adopted from a modified version of Children's Cancer Group (CCG) 1900 protocol. At the time of this publication, a total of 79 patients were treated using the AYA-15 protocol between 2015 and 2020). Event-free survival (FFS), disease-free survival (DFS), and overall survival (OS) were analyzed using cumulative incidence and Kaplan-Meier methods. Results: The median age at diagnosis was 18 years (14–51 years) with 63% male patients. Complete remission (CR) at day 28 of induction was achieved in 88.6% of which 73.4% were minimal residual disease (MRD) negative. At a median follow up of 5 years, EFS, DFS and OS were 57.5%, 69.2% and 75.8% respectively. Toxicities were within the expected range with infections and transaminitis being the most common adverse events. Conclusion: Our single-center experience real-world data in treating AYA-ALL patients with pediatric-inspired protocol demonstrates encouraging results of high survival rate and excellent tolerability for patients aged 18–55 years.

Background: Few studies have comprehensively investigated the long-term second cancer risk among adolescent and young adult (AYA, aged 15-39 years) cancer survivors. This study investigated the long-term second cancer risk by including the full range of first and second cancer combinations with at least 10 observations in the Netherlands between 1989 and 2018., Materials and Methods: First and second primary cancer data of all 6-month AYA cancer survivors were obtained from the nationwide population-based Netherlands Cancer Registry. Excess cancer risk compared to the general population was assessed with standardized incidence ratio (SIR) and absolute excess risk (AER) statistics up to 25 years after diagnosis. Cumulative incidences were estimated, using death as a competing risk factor. Analyses were carried out with and without applying multiple cancer rules., Results: The cohort included 99 502 AYA cancer survivors. Male survivors had a 2-fold higher risk of developing any cancer compared to the general population, whereas this was around 1.3-fold in females. AERs were 17.5 and 10.1 per 10 000 person-years for males and females. The long-term excess risk of cancer was significantly higher for most first and second primary cancer combinations, but comparable and lower risk estimates were also observed. Application of the multiple cancer rules resulted in a noticeable risk underestimation in melanoma, testicular, and breast cancer survivors. Risk outcomes remained similar in most cases otherwise. The cumulative incidence of second cancer overall increased over time up to 8.9% in males and 10.3% in females at 25 years' follow-up. Highest long-term cumulative incidences were observed among lymphoma survivors (13.3% males and 18.9% females)., Conclusions: AYA cancer survivors have a higher cancer risk compared to the general population for most cancers up to 25 years after their initial cancer diagnosis. Additional studies that investigate risk factors for the specific cancer type combinations are needed to develop personalized follow-up strategies., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Summary: Background: Adolescents and young adults might play a key role in the worldwide spread of Coronavirus Disease 2019 (COVID-19) because they are more likely to be involved in overseas study, business, work, and travel. However, the epidemiological and clinical characteristics remain unknown. Methods: We collected demographic, epidemiological, and clinical data from 46 confirmed COVID-19 patients aged 10 to 35 years from the Chongqing Three Gorges Central Hospital. Several key epidemiological parameters, asymptomatic cases, transmission to family members, and clinical characteristics at admission and during treatment were summarized. Results: Of 46 confirmed patients, 14 patients (30.4%) were aged between 10 and 24 years, and 24 (52.2%) patients were male. The estimated mean incubation period was 6.6 days (95% confidence interval [CI] 4.4–9.6). The median serial interval was 1.9 days (95% CI 0.4–6.2). Three of the asymptomatic cases showed transmission to their family members. Only one patient was identified as a severe case at admission. The common symptoms at admission were dry cough (34, 81.0%) and fever (29, 69.1%). Nearly 60% of the patients showed ground-glass opacity on chest computed tomography. Three patients developed acute kidney injury during treatment. Most of the patients (78.3%) recovered and were discharged by the end of the follow-up. Conclusions: This single-center study with a relatively small sample size showed that adolescent and young adult patients with COVID-19 had a long incubation period and a short serial interval. The transmission occurred from asymptomatic cases to family members. Fewer patients developed complications during treatment.

Purpose: Without a structured health-care transition (HCT) process, youths with chronic conditions face increased morbidity, care gaps, and dissatisfaction. This article documents the process and outcomes of implementing a standardized approach in a large children's hospital., Methods: Children's Mercy Kansas City adopted Got Transition's Six Core Elements of Health Care Transition and established a system-wide implementation plan, between 2015 and 2019, involving leadership buy-in, consumer engagement, infrastructure improvements, and quality improvement efforts. Outcomes measured included the number of youths aged 12-21 years receiving transition readiness assessments and participating in goal setting, receiving counseling, and receiving a transfer order, if appropriate. Also, Division-specific process outcome surveys were conducted annually using Got Transition's Current Assessment of HCT Activities., Results: A total of 8,099 unique patients received a structured HCT intervention using the Six Core Element approach over the 5-year period. From 2015 to 2019 the average annual growth was: 207% for completion of transition readiness and goals assessments, 243% for charting of HCT discussions, and 105% for transfer orders. In 2015, 3/20 (15%) divisions were implementing this HCT intervention; in 2019, 17/20 (85%) divisions were implementing it, representing a 467% growth. Division participation in measuring HCT implementation also increased by 89% from 9/20 in 2016 to 17/20 in 2019. The average Current Assessment of HCT Activities scores increased by 35% from 14.55/32 to 19.67/32 during that time., Discussion: This hospital-wide program demonstrates that a standardized HCT process can be successfully implemented in a diverse group of outpatient pediatric primary and subspecialty care settings., (Copyright © 2023 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: We described sun protective behaviors in adolescents and young adults (AYA) compared to older adults., Methods: We used data from the 2013-2018 National Health and Nutrition Examination Survey, a nationally representative samples of the civilian, noninstitutionalized US population (10,710 respondents aged between 20 and 59 and without a history of skin cancer diagnoses). The primary exposure for the study was age group: aged 20-39 defined as AYA and aged 40-59 as adults. The outcome variable was sun protective behaviors: stay in the shade, wear a long-sleeved shirt, use sunscreen, at least one of the three; and all three measures. Multivariable logistic regression models were used to assess association between age group and sun protective behaviors adjusting for sociodemographic factors., Results: Overall, 51.3% of respondents were AYA, 76.1% reported staying in the shade, 50.9% using sunscreen, 33.3% wearing long-sleeved clothes, 88.1% engaging in one of the three behaviors, and 17.1% engaging in all three behaviors. In the adjusted models, the odds of engaging in all three behaviors among AYAs was 28% (aOR: 0.72, 95% CI: 0.62-0.83) lower than adult respondents. Compared to adults, AYAs were 22% less likely to wear long sleeved clothes (aOR: 0.78, 95% CI: 0.70-0.87). There were no significant differences in the odds of engaging in at least one sun protective behavior, using sunscreen, and staying in the shade between AYAs and adults., Conclusions: More targeted interventions need to be implemented to decrease the risk of skin cancer in the AYA population., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 National Medical Association. Published by Elsevier Inc. All rights reserved.)

Purpose: This study assessed healthcare transition (HCT) readiness and barriers to HCT among transgender and gender diverse (TGD) adolescent and young adults (AYA) using mixed-method techniques., Methods: Fifty TGD AYA participants were surveyed using a validated transition readiness assessment questionnaire and open-ended questions examining challenges, influential factors, and health implications of HCT. Open-ended responses underwent qualitative analysis to identify consistent themes and response frequency., Results: Participants felt most prepared for communicating with providers and completing medical forms and least prepared for navigating insurance/financial systems. Half of the participants anticipated worsening mental health during HCT, with additional concerns related to transfer logistics and transphobia/discrimination. Participants identified intrinsic skills and external factors (such as social relationships) that would contribute to a more successful HCT., Discussion: TGD AYA face unique challenges in navigating the transition to adult health care, particularly related to concerns of discrimination and negative impacts on mental health, but these challenges may be mitigated by certain intrinsic resilience factors as well as targeted support from personal networks and pediatric providers., (Copyright © 2023 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Current studies on musculoskeletal (MSK) disorders mainly focus on the elderly, while adolescents and young adults (AYAs) are often neglected despite their unique epidemiology, healthcare needs and societal implications. To bridge this gap, we evaluated the global burden and temporal trends of MSK disorders among AYAs from 1990 to 2019, as well as their common categories and main risk factors., Methods: Data on the global burden and risk factors of MSK disorders were obtained from the Global Burden of Diseases study 2019. Age standardized rates for incidence, prevalence and disability-adjusted life-years (DALYs) were calculated using the world population age standard, and their temporal trends were evaluated by estimated annual percentage changes (EAPC). Locally estimated scatterplot smoothing (LOESS) regression was used to explore the association between two variables., Results: Over the past 30 years, MSK disorders have become the third leading cause of global DALYs among AYAs, with 36.2%, 39.3%, and 21.2% of increases in incident cases, prevalent cases and DALYs, respectively. In 2019, age standardized incidence, prevalence and DALY rates for MSK disorders were positivity associated with socio-demographic index (SDI) among AYAs in 204 countries and territories. The global age-standardized prevalence and DALY rates of MSK disorders began to increases among AYAs since 2000. In the last decade, countries with high SDI not only presented the only increase in age-standardized incidence rate across all SDI quintiles (EAPC = 0.40, 0.15 to 0.65), but also displayed the most rapid increases in age-standardized prevalence and DALY rates (EAPC = 0.41, 0.24 to 0.57; 0.39, 0.19 to 0.58, respectively). Low back pain (LBP) and neck pain (NP) were the most common MSK disorders among AYAs, accounting for 47.2% and 15.4% of global DALYs of MSK disorders in this population, respectively. Rheumatoid arthritis (RA), osteoarthritis (OA), and gout exhibited increasing trends in global age-standardized incidence, prevalence, and DALY rates among AYAs over the past 30 years (all EAPC >0), whereas LBP and NP showed declining trends (all EAPC <0). Occupational ergonomic factors, smoking and high BMI accounted for 13.9%, 4.3%, and 2.7% of global DALYs for MSK disorders among AYAs, respectively. The proportion of DALYs attributable to occupational ergonomic factors was negatively associated with SDI, whereas the proportions attributable to smoking and high BMI increased with SDI. Over the last 30 years, both the proportions of DALYs attributable to occupational ergonomic factors and smoking have consistently decreased globally and across all SDI quintiles, while the proportion attributable to high BMI has increased., Conclusions: MSK disorders have emerged as the third leading cause of global DALYs among AYAs over the past three decades. Countries with high SDI should make more efforts to tackle the dual challenges posed by the high levels and rapid increases in age standardized incidence, prevalence, and DALY rates in the last decade., Competing Interests: Declaration of Competing Interest This statement is to certify that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Elsevier B.V. All rights reserved.)

Purpose: Studies have highlighted geographic variation in cancer incidence rates among American Indian and Alaska Native (AI/AN) populations. This is the first study to comprehensively evaluate incidence rates and trends among non-Hispanic AI/AN (NH-AI/AN) adolescents and young adults (AYAs) ages 15-39 years., Methods: Using the United States Cancer Statistics AI/AN Incidence Analytic Database, we identified all malignant cancer cases for NH-AI/AN AYA populations for the years 1999-2019. We calculated age-adjusted incidence rates (per 100,000) for NH-AI/AN populations overall, by region, and by age group. We calculated the total percent change in the incidence of leading AYA cancers between 1999 and 2019, and trends by region and cancer type using Joinpoint analysis., Results: Testicular (13.6) and breast (19.0) cancers had the highest incidence of all AYA cancers in NH-AI/AN males and females, respectively. Overall AYA cancer rates increased by 1.4% in NH-AI/AN males and 1.8% in NH-AI/AN females annually between 1999 and 2019. Increases were observed by age group and geographic region., Conclusions: This study describes regional differences in incidence rates of AYA cancers among NH-AI/AN populations. This data can help inform resource and cancer control priorities and strategies to reduce cancer risk and enhance access to quality diagnostic and treatment services for this population., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Published by Elsevier Inc.)

Purpose: COVID-19 risk mitigation efforts could have negatively impacted anxiety, depression, and substance use among adolescents and young adults., Methods: We analyzed 45,223 emergency department visits from April 2018 to March 2022 of patients aged 12-21 in Pinellas County, Florida., Results: Frequency of overdose, anxiety, and depression significantly increased from the pre-COVID-19 to the COVID-19 period. Anxiety (adjusted odds ratio: 1.49, 95% confidence interval: 1.11, 1.98) and depression (adjusted odds ratio: 2.89, 95% confidence interval: 2.15, 3.88) were associated with significantly higher odds of overdose during COVID-19., Discussion: Mental health and overdose among adolescents and young adults worsened during COVID-19, necessitating greater screening and treatment in primary care., (Copyright © 2023 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Prior studies have identified a significant relationship between internalized transphobia and poor mental health among transgender and gender-diverse (TGD) adults; however, this relationship has not been extensively examined among youth. Further, little research has sought to explore protective factors, such as identity pride, and their influence on this relationship. We examined the association between internalized transphobia and depression and anxiety symptoms among TGD youth and explored the moderating role of gender identity pride on these associations., Methods: Participants were 315 TGD youth ages 12-20 years (mean = 16; standard deviation = 1.89) seeking gender-affirming hormone treatment at one of four major pediatric hospitals across the United States. At the time of enrollment, participants were naïve to gender-affirming hormone treatment. Participants self-reported mental health, internalized transphobia, and identity pride. Multiple regression models were used with depression and anxiety symptoms as outcomes and age, designated sex at birth, and perceived parental support included as covariates., Results: Greater internalized transphobia was associated with greater depressive symptoms, and gender identity pride moderated this relationship, such that greater gender identity pride was associated with fewer depressive symptoms. Greater internalized transphobia was significantly associated with greater anxiety symptoms; no moderation effect was observed for this relationship., Discussion: Gender identity pride influenced mental health symptoms for youth experiencing internalized transphobia and represents a potential key protective factor. These results support efforts to further develop, test, and implement clinical inventions to bolster identity pride for TGD youth., (Copyright © 2023 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Assessing the perceived social support (PSS) that adolescents and young adults (AYAs) with cancer receive from family, friends, and healthcare providers is critical to promoting their adjustment. This study developed a reliable and comprehensive self-report PSS assessment tool that measures various aspects of social support by translating existing measurements into Korean., Methods: The translation was completed in accordance with international guidelines. To focus on cultural adaptation, the main ideas associated with items were translated to reflect the differences between Western and Eastern culture. In total, 144 Korean AYAs with cancer (mean age: 17 years; 46% female) completed the translated version. A separate principal component analysis (PCA) with an orthogonal quartimax rotation, a minimum eigenvalue of 1.0, and minimum factor loadings of 0.50 was used for each subscale. Cronbach's alpha coefficients were calculated for each PCA-derived subscale., Results: Four subscales with 46 items were identified. Two subscales represented perceived emotional support within the family (PSS-ESF, 14 items) and the AYA's perceived helpfulness within the family (PSS-HWF, 3 items). The third scale represented the perceived support of friends (PSS-Friends, 14 items). The final scale represented the perceived support of healthcare providers (PSS-HCPs, 15 items). Excellent reliability per subscale was demonstrated (Cronbach's alpha: 0.93 for PSS-ESF, 0.73 for PSS-HWF, and 0.92 each for PSS-Friends and PSS-HCPs)., Conclusions: A culturally adapted and reliable Korean version questionnaire with four independent subscales was developed. Further assessment of the Korean PSS is required and will contribute to the development of culturally adapted and tailored interventions., Competing Interests: All authors have none to declare., (© 2023 The Authors.)

Background: Cancer epidemiology is unique in adolescents and young adults (AYAs; aged 15-39 years). The European Society for Medical Oncology/European Society for Paediatric Oncology (ESMO/SIOPE) AYA Working Group aims to describe the burden of cancers in AYAs in Europe and across European Union (EU) countries., Patients and Methods: We used data available on the Global Cancer Observatory. We retrieved crude and age-standardised (World Standard Population) incidence and mortality rates. We reported about AYA cancer burden in Europe and between 28 EU member states. We described incidence and mortality for all cancers and for the 13 cancers most relevant to the AYA population., Results: Incidence and mortality varied widely between countries with the highest mortality observed in Eastern EU countries. Cancers of the female breast, thyroid and male testis were the most common cancers across countries followed by melanoma of skin and cancers of the cervix. Variations in cancer incidence rates across different populations may reflect different distribution of risk factors, variations in the implementation or uptake of screening as well as overdiagnosis. AYA cancer mortality disparities may be due to variation in early-stage diagnoses, different public education and awareness of cancer symptoms, different degrees of access or availability of treatment., Conclusions: Our results highlight the future health care needs and requirements for AYA-specialised services to ensure a homogeneous treatment across different countries as well as the urgency for preventive initiatives that can mitigate the increasing burden., Competing Interests: Disclosure DS reports receipt of honoraria for providing academic peer review for research programme from French INCa, non-financial interest for advisory role in the clinical reference group advising NHS England about cancer policy in children and young people and non-remunerated membership of the Association of Cancer Physicians of the UK, SIOP Europe Adolescent Cancer Committee; IBS reports receipt of honoraria for participation in Advisory Board from Roche, receipt of honoraria as invited speaker from AstraZeneca, Novartis, Pfizer, Roche, receipt of personal and institutional financial interest as local PI from Novartis, Roche, non-financial interest for serving as local PI in EORTC Breast Group, OncoDistinct studies and non-remunerated advisory role in the Ethical Committee Serbia, National Agency for Drug Registration Serbia, the Working Group for Oncology of the Ministry of Health Serbia; NG reports receipt of honoraria to institution for participation in Advisory Board from Y-mAbs Therapeutics, receipt of financial support to institution from Eisai for covering travel expenses and registration fees as invited speaker at international meeting for the presentation of the results from the studies as international PI, receipt of consultancy fee to institution from Ipsen, non-remunerated Co-chair of the Fostering Age inclusive Research (FAIR) trial group of ACCELERATE; non-remunerated member of the Executive Committee of EEC (Euro-Wing Consortium), non-financial interest for leadership role as Chair of the FOSTER Consortium (Fight Osteosarcoma Through European Research) and non-remunerated member of GO-AJA, SFCE, SIOP Europe; FP reports receipt of honoraria for participation in Advisory Board from Roche Diagnostics, receipt of honoraria for providing expert testimony from Ipsen, Merck and non-financial interest for leadership role as Scientific Director of the European School of Oncology; ATo reports receipt of honoraria for participation in Advisory Board from MSD, AstraZeneca, Pfizer, Eli Lilly, receipt of honoraria as invited speaker from Eli Lilly, Novartis and non-remunerated member of AIOM; KS reports receipt of honoraria for participation in Advisory Board from Bayer, Novartis, Novo Nordisk, Roche, non-financial interest for leadership role in PanCare, SPOG, SSPHO and non-remunerated member of Board of Directors of SIOP Europe; GM reports receipt of honoraria for participation in Advisory Board from BMS, Janssen, Roche, Takeda, and receipt of honoraria as invited speaker from Amgen, AstraZeneca, MSD, Novartis, Pfizer; SB reports receipt of honoraria for participation in Advisory Board from Bayer Healthcare, Boehringer Ingelheim, Eli Lilly, Hofmann La Roche, MAP-Biopharma; non-financial interest as principal investigator of the Bayer’s larotrectinib study; and non-remunerated member of the European Musculoskeletal Oncology Society (EMSOS), German Pediatric Oncology Society (GPOH); ES reports receipt of honoraria for participation in Advisory Board from AstraZeneca A.E., AstraZeneca UK Ltd., Gilead Sciences Hellas, Merck, Sharp & Dohme, Pfizer Hellas, receipt of honoraria as invited speaker from Amgen Hellas, Pfizer Hellas, receipt of honoraria for providing expert testimony from Ipsen and non-remunerated member of Board of Directors of Hellenic Oncology Research Group, Hellenic Society of Medical Oncology. All other authors have declared no conflicts of interest., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Major depressive episode (MDE) is the main clinical feature of mood disorders (major depressive disorder and bipolar disorder) in adolescents and young adults and accounts for most of the disease course. However, 30%-40% of MDE patients not responding to clinical first-line interventions. It is crucial to predict treatment response in the early stages and identify biomarkers associated with treatment response. Graph Isomorphism Network (GIN), a deep learning method, is promising for predicting treatment response for individual MDE patients with more powerful representation ability to capture the features of brain functional connectivity., Methods: In this study, GIN was used to predict individual treatment response in 198 adolescents and young adults with MDE. The most discriminating regions were also identified for the treatment response prediction., Results: Using GIN approach, the baseline functional connectivity could predict 79.8% responders and 67.4% non-responders to treatment (accuracy 74.24%). Furthermore, the most discriminating brain regions were mainly involved in paralimbic and subcortical areas., Conclusions: GIN has shown potential in predicting treatment response for individual patients, which may enable personalized treatment decisions. Furthermore, targeted interventions focused on modulating the activity and connectivity within paralimbic and subcortical regions could potentially improve treatment outcomes and enable personalized interventions for adolescents and young adults with MDE., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023. Published by Elsevier Inc.)

Introduction: Binge drinking is a widespread health compromising behaviour among adolescents and young adults and is one of the leading causes of mortality and injuries among this population. The definitions and measurement methods of binge drinking are heterogeneous but constitute a crucial component in the literature on associated factors related to binge drinking. This study focused on how binge drinking is defined and measured in the literature exploring its associated risk factors among adolescents and young adults., Methods: The databases PubMed, Embase, PsycINFO and Social Care were searched for articles published between 1 January 2006 and 30 April 2020 using 3 concepts: binge drinking; risk or protective factors; and adolescents/young adults with respective key words. Data were extracted on the main characteristics of studies and the parameters of binge drinking measurements., Results: 173 studies were included, mostly cross-sectional (61 %) and longitudinal (38 %). Only 23 % of the studies explicitly referred to a standardised definition of binge drinking even though 76 % of the studies used a consensual threshold of 5 drinks or more for men. A lower threshold for women was applied in 26 % of the studies. Recall periods ranged between 2 weeks and 1 year in 85 % of the studies and only 16 % presented binge drinking in terms of frequency and/or quantity of drinks., Conclusion: Our results highlight the heterogeneity in the definitions and measurements of binge drinking, raising concerns for meaningful comparisons between studies focused on factors associated with the behaviour. The scientific community needs to be aware of these variations and address the gap of poor stratification and inconsistencies in binge drinking reporting., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives: This qualitative-descriptive study explored adolescent and young adult (AYA) perspectives, experiences, and challenges with openness and closedness in family communication about Li-Fraumeni syndrome (LFS)., Methods: We conducted interviews with AYAs (aged 15-39 years) with LFS enrolled in the National Cancer Institute's LFS study (NCT01443468). An interprofessional clinician-researcher team analyzed transcribed data using the constant comparative method and interpretive description., Results: AYAs (N = 38; 26 females, 12 males, mean age=29 years) reported navigating openness and closedness about LFS in their families, which varied by LFS topic, relationship, disease trajectory, and developmental phase. AYAs described communication challenges, including broaching difficult topics (e.g., reproductive decision-making, end-of-life), balancing information-sharing with emotionally protecting family and self, and struggling with interactions that cause relational tensions., Conclusions: AYAs reported experiencing LFS family communication challenges that disrupted their psychosocial well-being. LFS-related stressors and life transitions complicated and were complicated by these challenging family interactions., Practice Implications: Clinicians may support AYAs with LFS by inquiring about family communication, responding empathically to communication concerns, providing resources to support difficult conversations, and engaging mental health providers as needed. Researchers could partner with AYAs to develop tailored communication skills training and social support tools., Competing Interests: Declaration of Competing Interest The authors report no declarations of interest., (Published by Elsevier B.V.)

Context: Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL., Objectives: The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer., Methods: In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions., Results: N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions., Conclusion: The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL., (Copyright © 2022. Published by Elsevier Inc.)

Background and Objective: Hospitalizations for children with complex chronic conditions (CCC) at pediatric hospitals have risen over time. Little is known about what hospital types, pediatric or adult, adolescents, and young adults (AYA) with CCCs use. We assessed the types of hospitals used by AYAs with CCCs., Methods: We performed a cross-sectional study of 856,120 hospitalizations for AYAs ages 15-to-30 years with ≥1 CCC in the 2017 National Inpatient Sample. We identified AYA with CCC by ICD-10-CM diagnosis codes using the pediatric CCC classification system version 2. Hospital types included pediatric hospitals (n = 70), adult hospitals with pediatric services (n = 277), and adult hospitals without pediatric services (n = 3975). We analyzed age trends by hospital type and CCC count in 1-year intervals and dichotomously (15-20 vs 21-30 years) with the Cochran-Armitage test., Results: The largest change in pediatric hospitals used by AYA with CCCs occurred between 15 and 20 years with 39.7% versus 7.7% of discharges respectively (P< 0.001). For older AYA (21 to 30 years), 1.0% of discharges occurred at pediatric hospitals, compared with 65.6% at adult hospitals without pediatric services (P < 0.001). Older AYA at pediatric hospitals had more technology dependence (42.5%) versus younger AYA (27.6%, p < 0.001)., Conclusions: Most discharges for AYAs ≥21 years with CCCs were from adult hospitals without pediatric services. Higher prevalence of technology dependence and neuromuscular CCCs, as well as multiple CCCs, for AYA 21-to-30 years discharged from pediatric hospitals may be related to specific care needs only found in pediatric settings and challenges transferring into adult hospital care., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background: Adolescent and young adult (AYA) cancer survivors, 18-39 years at initial cancer diagnosis, often self-report negative consequences of cancer (treatment) for their career. Less is known, however, about the objective impact of cancer on employment and financial outcomes. This study examines the employment and financial outcomes of AYA cancer survivors with nationwide population-based registry data and compares the outcomes of AYAs with cancer with an age- and sex-matched control population at year of diagnosis, 1 year later (short-term) and 5 years later (long-term)., Patients and Methods: A total of 2527 AYAs, diagnosed in 2013 with any invasive tumor type and who survived for 5 years, were identified from the Netherlands Cancer Registry (clinical and demographic data) and linked to Statistics Netherlands (demographic, employment and financial data). AYAs were matched 1 : 4 with a control population based on age and sex (10 108 controls). Analyses included descriptive statistics, chi-square tests, independent samples t-tests, McNemar tests and logistic regression., Results: AYA cancer survivors were significantly less often employed compared with their controls 1 year (76.1% versus 79.5%, P < 0.001) and 5 years (79.3% versus 83.5%, P < 0.001) after diagnosis, and received more often disability benefits (9.9% versus 3.1% 1 year after diagnosis, P < 0.001; 11.2% versus 3.8% 5 years after diagnosis, P < 0.001). Unemployed AYAs were more often diagnosed with higher disease stages (P < 0.001), treated with chemotherapy (P < 0.001), radiotherapy (P < 0.001) or hormone therapy (P < 0.05) and less often with local surgery (P < 0.05) compared with employed AYAs 1 and 5 years after diagnosis., Conclusion: Based on objective, nationwide, population-based registry data, AYAs' employment and financial outcomes are significantly affected compared with age- and sex-matched controls, both short and long-term after cancer diagnosis. Providing support regarding employment and financial outcomes from diagnosis onwards may help AYAs finding their way (back) into society., Competing Interests: Disclosure The authors have declared no conflicts of interest. Data sharing Restrictions apply to the availability of the NCR and CBS data described in this paper. Both parties need to give permission to access the data. Ethics Ethical review and approval were waived. NCR and CBS data are collected for registration purposes. The NCR and CBS both reviewed and approved the study protocols., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Poorly planned healthcare transition (HCT) from pediatric to adult-based care for adolescents and young adults with special healthcare needs (AYASHCN) is associated with increased morbidity and mortality. Most pediatricians and pediatric residents are not trained to assist AYASHCN with HCT planning. An electronic medical record-based Transition Planning Tool (TPT) was developed at a large children's hospital to guide provider-patient interactions around HCT planning. The purpose of this study was to evaluate an educational intervention to promote residents' use of the TPT., Methods: A multimodal (TPT training, demonstrations, use prompts, and case discussions) curriculum promoting the use of the TPT was developed and implemented within a one-month Adolescent Medicine Rotation. A prospective, nonrandomized, quasi-experimental design with Intervention and Historical Control groups was used. Forty-two residents received the intervention. Twenty-three Historical Control residents received minimal formal training in the TPT. Intervention Group residents completed prerotation/postrotation assessments measuring perceived importance of/comfort with HCT planning and self-reported HCT planning activities. TPT use was compared between the two groups., Results: Compared to the Historical Control Group, Intervention Group residents were significantly more likely to use the TPT (98% vs. 37%, p < .001) and had a higher mean number of uses (5.5 ± 3.0 vs. 2.6 ± 1.2, p < .001). Residents reported greater perceived importance of (p < .001) and engagement in (p < .001) transition planning activities after completing the intervention. Nearly all (91%) reported that their training increased their comfort in HCT planning., Conclusions: A targeted intervention improved pediatric residents' use of the TPT and HCT planning activities., (Copyright © 2022 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Adolescents and young adults (AYAs, aged 18-39 years) with advanced cancer have an increased life expectancy due to improvements and refinements in cancer therapies, resulting in a growing group of AYAs living with an uncertain and/or poor cancer prognosis (UPCP). To date, no studies have examined the difficulties of health care professionals (HCPs) providing care to AYAs with a UPCP. This study aimed to understand the challenges in daily clinical practice experienced by HCPs from different disciplines who provide palliative as well as general care to AYAs with a UPCP., Methods: HCPs from a variety of backgrounds (e.g. clinical nurse specialists, medical oncologists, neurologists psychologists) were invited for a semi-structured interview. The interviews were transcribed verbatim and analysed using reflexive thematic analysis. Two AYA patients were actively involved as research partners to increase the relevance of the study design and to optimise interpretation of results., Results: Forty-nine HCPs were interviewed. Overall, we found that the threat of premature death within this young patient group increased emotional impact on HCPs and evoked a feeling of unfairness, which was an extra motivation for HCPs to provide the most optimal care possible. We generated four key themes: (i) emotional confrontation (e.g. feeling helplessness and experiencing a greater sense of empathy), (ii) questioning own professional attitude and skills, (iii) navigating uncertainty (e.g. discussing prognosis and end of life) and (iv) obstacles in the health care organisation (e.g. lack of knowledge and clarity about responsibilities)., Conclusions: HCPs experienced unique emotional and practical challenges when providing care to AYAs with a UPCP. The results from this study highlight the need to develop an education module for HCPs treating AYAs with UPCP to increase their own well-being and optimise the delivery of person- and age-adjusted care., Competing Interests: Disclosure The authors have declared no conflicts of interest., (Copyright © 2022 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background: The COVID-19 pandemic has greatly altered the behavior of adolescents and young adults (AYAs) with cancer. No data exists on how gender influences the adherence of individuals with cancer to COVID-19 related public health guidelines and their preferred methods of receiving COVID-19 related information., Methods: We conducted a cross-sectional survey of adolescents and young adults with cancer. Data were summarized using descriptive statistics. Multiple logistic regression was used to assess differences in adherence to COVID-19 preventative behaviors, and differences in preferred information sources of COVID-19 related information between men and women., Results: Among 633 participants, adherence to key COVID-19 preventative measures was 44.9-58.8% for males and 53.4-68.1% for females. After adjusting for key confounding variables in multivariable analysis, males were less likely to adhere to frequent hand washing (AOR [adjusted odds ratio] 1.45, 95% CI [confidence interval] 1.03-2.03), not touching face (AOR 1.82, 95% CI 1.29-2.56) and social distancing (AOR 1.93, 95% CI 1.37-2.71) than females. Both genders preferred to receive information from their cancer institutes and social media., Discussion: Gender-specific interventions are needed to improve the adherence of males to COVID-19 precautionary measures. Information should be disseminated via cancer institutes and social media as these are the preferred sources of COVID-19 related information among AYAs with cancer., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Purpose: To investigate the association between adolescent and young adult (AYA) well-care visits and emergency department (ED) utilization., Methods: Vermont's all-payer claims data were used to evaluate visits for 49,089 AYAs (aged 12-21 years) with a health-care claim from January 1 through December 31, 2018. We performed multiple logistic regression analyses to determine the association between well-care visits and ED utilization, investigating potential moderating effects of age, insurance type, and medical complexity., Results: Nearly half (49%) of AYAs who engaged with the health-care system did not attend a well-care visit in 2018. AYAs who did not attend a well-care visit had 24% greater odds (95% confidence interval [CI]: 1.19-1.30) of going to the ED at least once in 2018, controlling for age, sex, insurance type, and medical complexity. Older age, female sex, Medicaid insurance, and greater medical complexity independently predicted greater ED utilization in the adjusted model. In stratified analyses, late adolescents and young adults (aged 18-21 years) who did not attend a well-care visit had 47% greater odds (95% CI: 1.37 - 1.58) of ED visits, middle adolescents (aged 15-17 years) had 9% greater odds (95% CI: 1.01-1.18), and early adolescents (aged 12-14 years) had 16% greater odds (95% CI: 1.06 - 1.26)., Conclusions: Not attending well-care visits is associated with greater ED utilization among AYAs engaged in health care. Focus on key quality performance metrics such as well-care visit attendance, especially for 18- to 21-year-olds during their transition to adult health care, may help reduce ED utilization., (Copyright © 2021 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The cancer burden in adolescents and young adults (AYAs) deserves more attention. However, global cancer statistics for AYAs are often presented as aggregates, concealing important heterogeneity. This study aimed to describe the worldwide profile of cancer incidence, mortality, and corresponding trends from 1990 to 2019 among 15-39-year olds by focusing on the patterns by age, sex, sociodemographic index (SDI), and regions., Patients and Methods: Global, regional, and country data on the number of cancer cases and cancer-related deaths for 29 cancer types were collected from the 2019 Global Burden of Disease (GBD) Study. We also summarized the results using five levels of the SDI and 21 GBD regions., Results: In 2019, an estimated 1 335 100 new cancer cases and 397 583 cancer-related deaths occurred among AYAs worldwide. While the incidence rate increased mildly, the death rate decreased significantly between 1990 and 2019, with an estimated annual percentage change of 0.38 (95% confidence interval 0.36-0.39) and -0.93 (95% confidence interval -0.95 to -0.92), respectively. The cancer burden was disproportionally greater among women than among men. The cancer profiles varied substantially across geographical regions, with the highest burden being in South Asia and East Asia. Besides, the cancer incidence in the high SDI regions was four times higher than that in the low SDI regions; however, the mortality burden in the high SDI region was lower than that in the low SDI region, which reflected the differences in cancer profiles across SDI regions and the inferior outcomes in the low SDI regions., Conclusion: This study updates the previous epidemiological data of the cancer burden of AYAs. The cancer burden in AYAs varied substantially according to age, sex, SDI, and geographical regions. These findings highlight that the specific cancer profile of AYA patients requires targeted cancer control measures to reduce the cancer burden in this age group., Competing Interests: Disclosure The authors declare that they have no competing interests., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Context: With advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death., Objective: To examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer., Methods: Qualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches., Results: Of the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning., Conclusion: Adaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death., (Published by Elsevier Inc.)

Purpose: Health care transition (HCT) is the complex process of changing from pediatric to adult-centered care. Comprehensive HCT processes have been associated with improved outcomes in all elements of the Triple Aim. Nationally accepted best practices emphasize Six Core Elements of HCT, including the use of transition readiness assessment tools completed during clinic visits. Specifically, Got Transition's tools include two 0-10 point self-report scales on the validated domains of importance of changing to an adult provider and managing their healthcare, and confidence in their ability to transition. The aim of this quality improvement project (QIP) was to improve the engagement of adolescents and young adults (AYAs), aged 14-20, in the process of transitioning from pediatric to adult care. The sub-aim focused specifically on parent/caregiver engagement in transition, using the same scales in a tool for parents/caregivers. An urban federally qualified health center initiated this QIP., Methods: This QIP utilized the Institute for Healthcare Improvement Model for Improvement and plan-do-study-act cycles., Results: Eighty-five AYAs and 40 parents/caregivers completed readiness assessments twice. Scores improved overall, reaching statistical significance with a small change in AYA mean scores for importance (.94) and confidence (.75). Provision of a transition policy and completion of readiness assessments by AYAs and parents/caregivers met the 70% goal. Patient portal enrollments increased from 4.2% to 12.5%, although did not meet the 30% goal., Conclusions: Engagement of AYAs and parents/caregivers was improved as a result of this QIP. Successful routine implementation of transition process measures demonstrated improved clinic-wide communication., (Copyright © 2021 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Glioblastoma (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)., Methods: Data on GBM was requested from the Jordan Cancer Registry (JCR), and statistical analysis was performed. All data were retrospective and anonymized., Results: Eight 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)., Conclusions: This 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., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Objective: Developing effective interventions to promote successful transition to adulthood for adolescents and young adults (AYA) with spina bifida (SB) requires input from SB community stakeholders, particularly AYA themselves. The goal of this study was to identify and prioritize facilitators and barriers of successful transition to a healthy adult life for AYA with SB., Methods: We utilized concept mapping, a community-engaged research methodology. We recruited a purposeful sample of SB community stakeholders: AYA with SB, parents/caregivers, pediatric and adult health care providers, and community organizations. Participants generated ideas to open-ended prompts. A subset of participants sorted responses into groups of similar ideas. Multidimensional scaling and hierarchical cluster analysis were applied to generate cluster maps. The concept map was determined by identifying the optimal cluster number that qualitatively represented meaningful and distinct concepts. Concepts were rated by participants for importance and feasibility., Results: Participants generated 90 unique ideas that were then sorted. The research team chose a 10-cluster concept map: coordinated and comprehensive medical care, health and wellness, self-management, self-advocacy, skills to maximize independence, inclusivity and relationship supports, physical accessibility of the environment, employment, finances, and community- and school-based resources. Self-management, self-advocacy, and inclusivity and relationship supports were rated as both highly feasible and important., Conclusions: By using concept mapping to engage diverse stakeholders, including people with intellectual, development, and physical disabilities, this study prioritized less traditional areas like inclusivity and relationship supports to focus improvement efforts relevant to AYA with SB becoming healthy adults., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objectives: Genetic predisposition is reportedly involved in early-onset oral cancer, although the genetic basis of this cancer remains unclear. The major histocompatibility complex class I-related chain A (MICA) plays a crucial role in eliminating malignant tumors by activating NKG2D, the natural killer (NK) receptor. MICA polymorphism might affect its binding to NKG2D. We aimed to find whether MICA gene microsatellite polymorphism is involved in the risk of oral squamous cell carcinoma (OSCC) development in a Japanese population., Materials and Methods: We recruited 386 patients with OSCC and 103 healthy controls. Genomic DNA was analyzed by PCR for microsatellite repeat polymorphism in the transmembrane region of the MICA gene. The groups were compared for the prevalence of various alleles and their association with disease prognosis and survival., Results: We found that adolescents and young adults (AYA) with OSCC were more likely to have the MICA A5.1 homozygous genotype than healthy controls (P = 0.0001), but their survival rate was higher than with other MICA genotypes (P = 0.0185)., Conclusion: These results suggest that cancer's immune escape is facilitated by MICA's failure to activate the NK cells. MICA A5.1 homozygosity plays a role in individual susceptibility to OSCC, increasing the risk of early-onset oral cancer. However, such patients have a better prognosis than those with other MICA genotypes., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

It is well recognised that adolescents and young adults (AYA) with cancer have inequitable access to oncology services that provide expert cancer care and consider their unique needs. Subsequently, survival gains in this patient population have improved only modestly compared with older adults and children with cancer. In 2015, the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) established the joint Cancer in AYA Working Group in order to increase awareness among adult and paediatric oncology communities, enhance knowledge on specific issues in AYA and ultimately improve the standard of care for AYA with cancer across Europe. This manuscript reflects the position of this working group regarding current AYA cancer care, the challenges to be addressed and possible solutions. Key challenges include the lack of specific biological understanding of AYA cancers, the lack of access to specialised centres with age-appropriate multidisciplinary care and the lack of available clinical trials with novel therapeutics. Key recommendations include diversifying interprofessional cooperation in AYA care and specific measures to improve trial accrual, including centralising care where that is the best means to achieve trial accrual. This defines a common vision that can lead to improved outcomes for AYA with cancer in Europe., Competing Interests: Funding The European Society for Medical Oncology (ESMO) (no grant number) and the European Society for Paediatric Oncology (SIOPE) (no grant number) were the legal sponsors of this position paper. No research funding for the meetings or manuscript preparation was received from any third parties. Disclosure DS reports receipt of research grants from Teenage Cancer Trust. FAP reports personal financial interest as a Scientific Director at the European School of Oncology; receipt of lecture/presentation fees from Prime Oncology and Takeda; receipt of honoraria for advisory board participation/advisory services from Roche, AstraZeneca, Clovis and Ipsen. LF reports receipt of funding from Teenage Cancer Trust. IB-S reports receipt of speaker fees from Roche, Novartis and Pfizer; direct research funding as Principal Investigator from Roche; financial support to institution for clinical trials from Roche. OS reports receipt of honoraria for advisory board participation from Genuity Science. LH reports receipt of speaker fees from Roche. WTAvdG reports receipt of research funding from Novartis, honoraria for advisory board from Bayer and consultancy fees from SpringWorks, all to her institutes. SB reports receipt of honoraria for advisory board participation from Pfizer, Bayer, Lilly, Novartis and Isofol. GM reports receipt of speakers fees from AstraZeneca, Roche, MSD, BMS, Pfizer, Takeda, Janssen, Novartis and Sanofi; receipt of consultancy fees from AstraZeneca, Roche, MSD, BMS, Novartis and Sanofi; direct research funding as Principal Investigator from AstraZeneca, Novartis and MSD; financial support to institution for clinical trials from AstraZeneca, Novartis and MSD. ES reports receipt of honoraria for the provision of advisory services from Roche Hellas, BMS, Pfizer Hellas, AstraZeneca, Amgen Hellas and Dimiourgiki Farmakeutikon Ypiresion AE; receipt of research funding from Astellas Pharma; travel and education support from Roche Hellas, Pfizer Hellas, Astellas Pharma, Novartis (Hellas), MSD Greece and Enorasis. All other authors have declared no conflicts of interest., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: This study examined whether transmasculine, transfeminine, and nonbinary adolescents and young adults (AYA) experience different levels of gender minority stress and resilience., Methods: Demographic and clinical information were abstracted from medical charts from AYA initiating gender-affirming care. Group comparisons between transgender and nonbinary groups were examined using one-way analyses of variance and Tukey's honestly significant difference post hoc tests., Results: Participants were 638 transgender and nonbinary AYA (65.5% transmasculine, 24.6% transfeminine, and 9.9% nonbinary). Transmasculine and transfeminine AYA reported more discrimination (ps = .008 and .006, respectively) compared to non-binary AYA. Transfeminine and nonbinary AYA reported more negative future expectations (ps = .006 and .016, respectively) and pride (ps ≤ .001 and .032, respectively) than transmasculine AYA., Conclusions: Findings suggest that transmasculine, transfeminine, and nonbinary AYA experience different levels of gender minority stress and resilience. Future research is warranted to further examine between-group differences and differential impact on mental health outcomes., (Copyright © 2020 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Health-related quality of life (HRQoL) data of sarcoma survivors are scarce and the impact of age remains unclear. The aims of this population-based study were to (i) compare HRQoL scores amongst three age-groups [adolescents and young adults (AYA, aged 18-39 years), older adults (OA, aged 40-69 years) and elderly (aged ≥70 years)]; (ii) compare HRQoL of each sarcoma survivor age group with an age- and sex-matched normative population sample; (iii) determine factors associated with low HRQoL per age group., Methods: Dutch sarcoma survivors, who were 2-10 years after diagnosis, were invited to complete the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30-questions questionnaire on HRQoL., Results: In total, 1099 survivors (58% response rate) completed the questionnaire: 186 AYAs, 748 OAs and 165 elderly. The median time since diagnosis for all patients was 5.2 years. Bone sarcomas were seen in 41% of AYAs, 22% of OAs and in 16% of elderly survivors (P < 0.01). AYA and OA survivors reported statistically significant and clinically meaningful worse physical, role, cognitive, emotional and social functioning compared with a matched norm population, which was not the case for elderly survivors. AYAs reported significantly worse scores on emotional and cognitive functioning compared with OA and elderly survivors. Malignant peripheral nerve sheath tumour, osteosarcoma and chordoma were the subtypes of which survivors reported the lowest HRQoL scores in comparison with the norm. For all age groups, chemotherapy, having a bone sarcoma and having comorbidities were most frequently associated with low scores on HRQoL subscales, whereas a shorter time since diagnosis was not., Conclusion: In this nationwide sarcoma survivorship study, the disease and its treatment had relatively more impact on the HRQoL of AYA and OA survivors than on elderly survivors. These results emphasise the need for personalised follow-up care that not only includes risk-adjusted care related to disease relapse, but also age-adjusted care., Competing Interests: Disclosure The authors have declared no conflicts of interest., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Lung cancer in young patients is an uncommon and understudied entity that harbors distinctive epidemiological, clinic-demographic, and genomic features. We carried out a systematic review of genomic profiling in young patients with lung cancer from 2010 to 2020 in the main electronic databases and selected 23 manuscripts. Lung cancer in young patients occurs more frequently in women with adenocarcinoma histology and at more advanced stages. Some studies report higher oncogenic genomic alteration in this population, with higher anaplastic lymphoma kinase rearrangements, a distinct profile of epidermal growth factor receptor mutations, and other novel genomic alterations. Although still uncommon, the implementation of next-generation sequencing (NGS) has shed some light on germline genomic alterations associated with lung cancer in young patients. Although outcomes when compared with the older population are conflicting, the overall prognosis is still poor in this subset of patients and efforts to find targetable genomic alterations should be made to improve survival., Competing Interests: Disclosure The authors have declared no conflicts of interest., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

When using radiation therapy for adolescents and young adults (AYA), paediatricians, adults' oncologists and radiation oncologists need to keep in mind several particularities through the whole therapeutic process. They embrace the indication, target volumes, prescribed dose, treatment techniques and follow-up. Indeed, the young age and the cancer features that characterised this population influence the modalities of irradiation. This article highlights the key points of AYA care with radiation therapy., (Copyright © 2020 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.)

Background: Pediatric-inspired regimens (PIR) in adolescents and young adults with acute lymphoblastic leukemia have led to better long-term outcomes. In Latin America, the adolescent and young adult population has an increasing incidence of acute lymphoblastic leukemia with poor outcomes (5-year OS of approximately 20%) with traditional regimens., Patients and Methods: A retrospective cohort study was performed of adolescent and young adult acute lymphoblastic leukemia patients treated with PIR in two reference centers in Mexico City between March 2016 and June 2019, in which the primary endpoint was OS, compared to a historic cohort of patients treated with hyper-CVAD treated between February 2009 and June 2015., Results: We compared 73 patients treated with PIR (46 and 27 received modified versions of the ALL-BFM 90 and CALGB C10403 regimens, respectively) and 173 patients treated with hyper-CVAD. Patients treated with PIR experienced higher 4-week complete response rates (79.5% vs. 64.2%; P = .02) and lower relapse rates (44.1% vs. 60.0%; P = .04). OS was significantly higher with PIR than with hyper-CVAD (24 months: 41.5% vs. 28.1%; P = .012). The benefit on OS for PIR was only significant for CALGB (24-month OS: 61.1% vs. 28.0%; P = .01) but not for BFM. In the multivariate analysis, hyperleukocytosis (hazard ratio [HR] = 1.90; 95% confidence interval [CI], 1.11-3.22; P = .02), autologous stem-cell transplantation (HR = 0.38; 95% CI, 0.17-0.86; P = .02), and 4-week complete response (HR = 0.43; 95% CI, 0.26-0.70; P < .01) were independent prognostic factors. For the group of patients older than 20 years, only CALGB had an independent prognostic factor for OS (HR = 0.44; 95% CI, 0.20-0.97; P = .04)., Conclusion: In terms of 4-week complete response, relapse rates, and OS, PIR provides benefits to Hispanic patients., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Introduction: Cancers of adolescents and young adults have particular epidemiological specificities. The improvement in their survival should be accompanied by an increased consideration of the treatments' side effects, among which the potential decrease in fertility. The objective of the study was to describe the access to fertility preservation of these patients at the University Hospital of Clermont-Ferrand over a period of 3 years., Methods: During this retrospective descriptive study, various socio-demographic and clinical data were collected., Results: One hundred and fifty new cases of cancers were diagnosed in patients aged 15 to 24 years. Forty-four percent received at least one fertility consultation, 29 % for girls and 58 % for boys (P<0.001). The number of cases that did not result in fertility preservation was significantly higher for girls than boys (P=0.005). Fertility preservation was mainly achieved by cryopreservation of ovarian tissue in female adolescents, ovocytes in young women and sperm in boys., Discussion: We observed sex disparities in access to fertility preservation. Despite the existence of recommendations, progress remains to be made. The establishment of clinico-biological platforms should allow a better awareness of patients and professionals, and thus promote access to fertility preservation techniques for young patients with cancer., (Copyright © 2020 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.)

Background: Long-term childhood and young adult cancer survivors are at increased risk of the late effects of multiple chronic conditions. In this study we estimate the cumulative burden of subsequent malignant neoplasms (SMN), cardiovascular and respiratory hospitalisations in long-term survivors of childhood and young adult cancers and associated treatment risks., Methods: Five-year survivors of cancer diagnosed aged 0-29 years between 1992-2009 in Yorkshire, UK were included. The cumulative count of all hospital admissions (including readmissions) for cardiovascular and respiratory conditions and all SMNs diagnosed up to 2015 was calculated, with death as a competing risk. Associations between treatment exposures and cumulative burden were investigated using multiple-failure time survival models., Results: A total of 3464 5-year survivors were included with a median follow-up of 8.2 years (IQR 4-13 years). Ten-years post diagnosis, the cumulative incidence for a respiratory admission was 6.0 % (95 %CI 5.2-6.9), a cardiovascular admission was 2.0 % (95 %CI 1.5-2.5), and SMN was 1.0 % (95 % CI 0.7-1.4) with an average of 13 events per 100 survivors observed (95 %CI 11-15). The risk of experiencing multiple events was higher for those treated with chemotherapy drugs with known lung toxicity (HR = 1.35, 95 %CI 1.09-1.68)., Discussion: Survivors of childhood and young adult cancer experience a high burden of morbidity due to respiratory, cardiovascular diseases and SMNs up to 20-years post-diagnosis. Statistical methods that capture multiple morbidities and recurrent events are important when quantifying the burden of late effects in young cancer survivors., Competing Interests: Declaration of Competing Interest None., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Context: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors., Objectives: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms., Methods: Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better?, Results: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies.", Conclusion: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Adolescents and young adults (AYAs) with cancer require dedicated management encompassing both adult and paediatric cancer services. Following a European survey, the European Society for Medical Oncology, the European Society for Paediatric Oncology and the Asian continental branch of International Society of Paediatric Oncology undertook a similar survey to assess AYA cancer care across Asia., Methods: A link to the online survey was sent to healthcare professionals (HCPs) in Asia interested in AYA cancer care. Questions covered the demographics and training of HCPs, their understanding of AYA definition, availability and access to specialised AYA services, the support and advice offered during and after treatment, and factors of treatment non-compliance., Results: We received 268 responses from 22 Asian countries. There was a striking variation in the definition of AYA (median lower age 15 years, median higher age 29 years). The majority of the respondents (78%) did not have access to specialised cancer services and 73% were not aware of any research initiatives for AYA. Over two-thirds (69%) had the option to refer their patients for psychological and/or nutritional support and most advised their patients on a healthy lifestyle. Even so, 46% did not ask about smokeless tobacco habits and only half referred smokers to a smoking cessation service. Furthermore, 29% did not promote human papillomavirus vaccination for girls and 17% did not promote hepatitis B virus vaccination for high-risk individuals. In terms of funding, 69% reported governmental insurance coverage, although 65% reported that patients self-paid, at least partially. Almost half (47%) reported treatment non-compliance or abandonment as an issue, attributed to financial and family problems (72%), loss of follow-up (74%) and seeking of alternative treatments (77%)., Conclusions: Lack of access to and suboptimal delivery of AYA-specialised cancer care services across Asia pose major challenges and require specific interventions., Competing Interests: Competing interests: CKL: Fees for Advisory Board from Amgen Asia. SB: Fees for Advisory Boards from Pfizer, Bayer, Lilly, Novartis, Isofol. LB: Fees for Advisory Board from Takeda. FAP: Fees from Roche, Astra Zeneca, Clovis and Ipsen. DS: Research support from the National Institute for Health Research, Cancer Research UK, the Teenage Cancer Trust, Pharmamar and AstraZeneca.

Introduction: The adolescent and young adult (AYA) age group (15-39 years) bears distinct characteristics in terms of cancer biology, long-term health and treatment-related complications and psychosocial aspects. The overall scenario of cancer including hematological malignancies (HMs) is largely unknown in Bangladesh, where a significant proportion of people (44% of total population) belong to AYA age group. This study aims to describe the patterns of HM among AYA in the context of Bangladesh METHODS: Two previously published datasets (on hematological malignancies and childhood and adolescent cancer) were merged to construct a comprehensive dataset focusing exclusively on HMs in AYA age group. Univariate descriptive statistics were calculated and bivariate association were tested using Pearson's Chi-square test., Results: A total of 2144 diagnosed HM related cases over a period of 2007-2014 were analyzed. Acute myeloid leukemia (AML) was the most frequent HM (35.1%) in AYAs, which was followed by acute lymphoblastic leukemia (ALL) and chronic myeloid leukemia (CML) constituting 22.7% and 20.8%, respectively. Among lymphomas, Non-Hodgkin lymphoma (NHL) constituted 13.9% of all HMs while 4.6% was for Hodgkin's lymphoma (HL)., Conclusion: This is the first attempt to provide a glimpse on the pattern and distribution of HMs among AYA in Bangladesh. Future studies are essential to get a better insight on the epidemiology, biology, potential risk factors and treatment outcomes for the AYA age group., (Copyright © 2017 Elsevier Ltd. All rights reserved.)