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Given recent advances in cancer therapeutics, there is a growing population of adolescent and young adult (AYA) cancer survivors navigating the physical and psychological consequences of cancer treatment. Fertility preservation (FP) conversations are of increasing importance for these survivors. Decision regret (DR) is a measure of distress or remorse following a health care decision, and it is a useful tool to evaluate the impact of a treatment on quality of life. The aim of this systematic review is to culminate existing literature focused on determinants of FP DR among AYA cancer survivors and to propose future interventions to reduce DR among AYA cancer survivors. An electronic database search was performed using PubMed, Web of Science, and APA PsycINFO for articles published before December 2023 using the following search criteria: PubMed: "Fertility Preservation"[Mesh] AND decision regret, APA PsycINFO and Web of Science: Fertility Preservation AND decision regret. Articles were organized into five categories that emerged after initial review. Nineteen articles that focused on DR and FP in AYA cancer survivors aged ≤40 and ≥12 years were included. Article results were categorized into five categories pertaining to determinants of FP DR: Unmet Informational and Emotional Needs, Need for Developmentally Appropriate Conversations, Insufficiency of Provider Training, Quality and Timeliness of Fertility Preservation Discussions, and Societal Barriers. These results highlight the need for improved patient and provider education on FP, such as future longitudinal studies focused on standardization of FP-related protocols and the impact of their implementation on DR, especially for AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Aim: Medical advancements will lead to more children with long‐term illnesses and/or disabilities undergoing the transition to adult care. Previous studies show that many young adults are unprepared for this transition, and might suffer from loss of follow‐up. This study aimed to investigate the post‐transfer experiences of the transition among young adults with long‐term illnesses and/or disabilities. Methods: A qualitative descriptive design was used. Three semi‐structured focus group interviews were conducted with 15 participants (18–25 years of age) recruited via patient organisations focusing on children and young adults with disabilities and/or long‐term illnesses. The interviews were analysed with conventional content analysis. Results: One theme emerged: limbo, defined as an indefinite experience without knowing when or even if something would happen, or whether they would be overlooked. The theme rested on four categories: transition experiences, organisational aspects, influence on daily life, and self‐management. Conclusion: Areas for improvement were identified across the entire transition that is, in the preparation, transfer, and post‐transfer stages. Our findings indicate a limited understanding among healthcare providers (HCPs) that the transition continues until the young adult has been fully integrated into adult care. [ABSTRACT FROM AUTHOR]

Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life. [ABSTRACT FROM AUTHOR]

Purpose: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15–25 years) with cancer and their caregivers. Methods: We recruited English‐ or Spanish‐speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi‐structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. Results: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross‐cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. Conclusion: Younger AYAs and their caregivers experience significant financial challenges and unmet health‐related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families. [ABSTRACT FROM AUTHOR]

IntroductionAdolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis.MethodsSemi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet.ResultsParticipants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers.DiscussionThe supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.

Abstract Purpose We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15–25 years) with cancer and their caregivers. Methods We recruited English‐ or Spanish‐speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi‐structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. Results We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross‐cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. Conclusion Younger AYAs and their caregivers experience significant financial challenges and unmet health‐related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.

Purpose: Survivors of cancer during young adulthood face multiple psychosocial challenges following treatment. This study explores psychosocial distress and unmet needs among young adult survivors treated of hematological malignancies. Methods: A total of 85 young adults aged between 18 and 39 years at time of diagnosis, were invited to join the survey after the completion of treatment with curative intent. Sociodemographic data and the need for advice were gathered with a self-report questionnaire. A set of standardized questionnaires for quality of life (EORTC QLQ-C30), psychosocial stressors (PHQ-S), fear of progression (PA-F-KF), cancer-related fatigue (EORTC QLQ-FA12), and symptoms of anxiety (GAD-7) or depression (PHQ-9) was employed. Descriptive statistics and multivariate analysis were conducted. Results: Forty-seven young adult cancer survivors responded. A quarter of patients (26%) reported depressive symptoms, 15% suffered from anxiety, 36% from fear of progression, and 21% reported increased psychosocial stressors. They had a lower QoL than the general population and reported poorer outcomes on all single-item and multi-symptom scales. Employment was significantly associated with lower levels of psychosocial distress, anxiety, fatigue, and better QoL. Conclusion: Young adult cancer survivors exhibited a high disposition for psychosocial distress. They reported excessive demands in everyday life and resumption of work. However, a longitudinal study of young adult cancer survivors is needed to confirm the results of this pilot study. In future, psycho-oncological and social support need to become an inherent part of the aftercare of survivors of young adult cancer survivors. [ABSTRACT FROM AUTHOR]

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms. [ABSTRACT FROM AUTHOR]

(1) Background: Strong evidence supports the persuasive positive effects of exercise for cancer patients and survivors. Different approaches of exercise programs have been established; however, the special interests of young adults (YAs) with cancer have rarely been considered in exercise interventions. Therefore, the study YOUng EXercisers (YOUEX) aimed to investigate exercise preferences in YAs. (2) Methods: YOUEX was a three-arm, patient preference-based non-randomized, longitudinal, pre–post exercise intervention, offering three different exercise modules to YAs during or after acute therapy (Module 1: online supervised group-based (M1); Module 2: online unsupervised (M2); Module 3: in-person supervised (M3)). The intervention period was 12 weeks with another 12-week follow-up period, the modules could be changed or amended after 6 and 12 weeks. (3) Results: 92 YAs were allocated to the study. At baseline, 50 YAs (54%) chose M2, 32 YAs (35%) M1 and 10 YAs (11%) M3. The analysis revealed high acceptability and feasibility of the online exercise programs (M1, M2). There was a high impact of the COVID-19 pandemic on the execution of M3. YAs showed diverse preferences in module selection due to differences in, e.g., cancer therapy status or favored level of supervision. (4) Conclusions: YAs need personalized exercise programs that consider their individual interests and needs. Online exercise programs can be a promising addition to existing exercise opportunities. They are an effective way to increase physical activity levels in YAs.

We sought to describe the relationship between COVID-19 risk perception and sexual behaviors among urban adolescents and young adults (AYA). Data were collected from 159 urban AYAs on COVID-19 risk perception, COVID-19 infections and deaths, romantic relationships, and sexual behavior during the stay-at-home order using a telephone survey. Seventy-nine percent of the study participants engaged in sexual intercourse during the stay-at-home order. Only 38% of these used condoms during their last sexual encounter. Experiencing COVID-19 positivity within their social circle was not related to COVID-19 testing. Concern for COVID-19 infection or experiencing a COVID-19 diagnosis or death in one's social circles was not associated with sexual intercourse or condom use. Urban AYA remained at risk for sexually transmitted infections, and COVID-19, given high baseline community rates of sexually transmitted infections and COVID-19, low condom use, and low COVID-19 risk perception at the time of the survey. [ABSTRACT FROM AUTHOR]

Simple Summary: Cancer rehabilitation should restore patients' quality of life (QOL), which is impaired by symptoms and treatment side effects. Here we investigate to which extent different age groups, frail patients, and men and women benefit from rehabilitation. To do this, reports given from patients themselves are used. We find that elderly patients suffer from a higher symptom burden and a lower QOL than younger individuals. Anxiety is more common among younger patients and women, while older patients tend to be more depressive. Regardless of age, sex and frailty, rehabilitation improves the QOL in these patient groups, and reduces distress and somatic symptoms. Cancer rehabilitation is thought to increase the quality of life (QOL) and functioning of cancer survivors. It remains, however, uncertain whether subgroups benefit equally from rehabilitation. We wished to investigate the outcomes of multimodal rehabilitation according to age, sex and functioning. Patients of an Austrian rehabilitation center routinely completed the EORTC QLQ-C30 and the hospital anxiety and depression scale (HADS) questionnaires prior to (T1), and after rehabilitation (T2). To compare the outcomes between age groups (i.e., <40, 41–69, and ≥70 years), sex, and the Norton scale risk status, repeated measures of analyses of variance were calculated. A total of 5567 patients with an average age of 60.7 years were included, of which 62.7% were female. With T1 indicating the cancer survivors' needs, older and high-risk patients reported lower functioning (all p < 0.001) and a higher symptom burden for most scales (all p < 0.05) before rehabilitation. Regardless of age, sex or risk status, the patients showed at a least small to medium improvement during rehabilitation for anxiety, depression, and most functioning and symptom scales. Some between-group differences were observed, none of which being of a relevant effect size as determined with the Cohen's d. In conclusion, QOL is improved by rehabilitation in all patients groups, independently from age, sex, or the risk status. [ABSTRACT FROM AUTHOR]

Objectives: Adolescents and young adult (AYA) cancer survivors face unique medical and psychosocial sequalae, including chronic health conditions, late effects of treatment and fear of recurrence. The meaning of cancer survivorship may be further complicated for AYAs with hereditary cancer predisposition syndromes. This study used a patient‐centered framework to investigate how AYAs with Li‐Fraumeni syndrome (LFS) consider cancer survivorship. Methods: An interprofessional team conducted 30 semi‐structured interviews with AYAs (aged 18–41, mean 31 years) enrolled in the National Cancer Institute's LFS Study (NCT01443468). Twenty had experienced at least one cancer diagnosis. Interview data were thematically analyzed by an inter‐professional team using interpretive description and grounded theory methods. Findings: Participants viewed "survivorship" as a period marked by no evidence of formerly diagnosed disease. By contrast, participants felt the label "survivor" was tenuous since LFS is characterized by multiple primary malignancies and uncertainty about intervals between one diagnosis and the next. Many AYAs viewed survivorship as requiring a high degree of suffering. Though many personally rejected "survivor" identities, almost all articulated its various functions including positive, negative, and more complicated connotations. Instead, they chose language to represent a range of beliefs about survival, longevity, prognosis, and activism. Conclusions: AYAs with LFS struggle with the term "survivor" due to their multi‐organ cancer risk, short intervals between malignancies, and evolving identities. Loved ones' cancer‐related suffering informed perspectives on survivorship. Survivorship care for AYAs with cancer risk syndromes requires interprofessional interventions that address their unique biomedical and psychosocial needs. [ABSTRACT FROM AUTHOR]

(1) Background: Strong evidence supports the persuasive positive effects of exercise for cancer patients and survivors. Different approaches of exercise programs have been established; however, the special interests of young adults (YAs) with cancer have rarely been considered in exercise interventions. Therefore, the study YOUng EXercisers (YOUEX) aimed to investigate exercise preferences in YAs. (2) Methods: YOUEX was a three-arm, patient preference-based non-randomized, longitudinal, pre–post exercise intervention, offering three different exercise modules to YAs during or after acute therapy (Module 1: online supervised group-based (M1); Module 2: online unsupervised (M2); Module 3: in-person supervised (M3)). The intervention period was 12 weeks with another 12-week follow-up period, the modules could be changed or amended after 6 and 12 weeks. (3) Results: 92 YAs were allocated to the study. At baseline, 50 YAs (54%) chose M2, 32 YAs (35%) M1 and 10 YAs (11%) M3. The analysis revealed high acceptability and feasibility of the online exercise programs (M1, M2). There was a high impact of the COVID-19 pandemic on the execution of M3. YAs showed diverse preferences in module selection due to differences in, e.g., cancer therapy status or favored level of supervision. (4) Conclusions: YAs need personalized exercise programs that consider their individual interests and needs. Online exercise programs can be a promising addition to existing exercise opportunities. They are an effective way to increase physical activity levels in YAs. [ABSTRACT FROM AUTHOR]

Simple Summary: Solid tumors account for ~60% of pediatric, as well as adolescent and young adult (AYA), cancers, and outcomes for patients with these progressive diseases remain poor. This highlights the critical need to develop tumor models from patients with aggressive cancers so that oncogenic signatures can be identified for therapeutic testing. Thus, patient-derived xenografts (PDXs) were established from sarcoma and Wilms tumor patients at diagnosis or following treatment. Overall, the molecular landscape of serially passaged PDXs recapitulated the original tumor based on an integrated multi-OMICS pipeline that cross-validated cancer-associated pathways. Actionable mechanisms of tumor progression were identified. CDK4/6 and BETs were prioritized as biomarkers of therapeutic response for in vivo validation. In osteosarcoma PDXs harboring pertinent molecular signatures, inhibition of CDK4/6 or BETs decreased growth. This systematic approach that links patient disease history to data generated from its corresponding PDX provides a foundation to discover improved therapies for patients with high-risk cancers. Establishment of clinically annotated, molecularly characterized, patient-derived xenografts (PDXs) from treatment-naïve and pretreated patients provides a platform to test precision genomics-guided therapies. An integrated multi-OMICS pipeline was developed to identify cancer-associated pathways and evaluate stability of molecular signatures in a panel of pediatric and AYA PDXs following serial passaging in mice. Original solid tumor samples and their corresponding PDXs were evaluated by whole-genome sequencing, RNA-seq, immunoblotting, pathway enrichment analyses, and the drug–gene interaction database to identify as well as cross-validate actionable targets in patients with sarcomas or Wilms tumors. While some divergence between original tumor and the respective PDX was evident, majority of alterations were not functionally impactful, and oncogenic pathway activation was maintained following serial passaging. CDK4/6 and BETs were prioritized as biomarkers of therapeutic response in osteosarcoma PDXs with pertinent molecular signatures. Inhibition of CDK4/6 or BETs decreased osteosarcoma PDX growth (two-way ANOVA, p < 0.05) confirming mechanistic involvement in growth. Linking patient treatment history with molecular and efficacy data in PDX will provide a strong rationale for targeted therapy and improve our understanding of which therapy is most beneficial in patients at diagnosis and in those already exposed to therapy. [ABSTRACT FROM AUTHOR]

Abstract Background In Denmark, around 500 adolescents and young adults (AYAs) aged 15–29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, however, not currently being adequately met. This study explores the distinctive needs of AYAs aged 15–25 and affected by cancer with the aim of developing and designing an intervention that accommodates these needs and allows AYAs to pursue everyday life following active cancer treatment. Methods We combined multiple qualitative methods to conduct six sub-studies: 1) participant observation among support groups for AYAs affected by cancer, 2) field visit at a large Danish hospital, 3) qualitative interviews with AYAs currently or previously diagnosed with cancer, 4) qualitative interviews with practitioners working with young cancer patients or AYAs with chronic conditions, 5) an interactive workshop with practitioners, and 6) an interactive workshop with AYAs. The empirical material was collected between May 2016 and April 2019. The empirical material was read, analysed thematically and coded into the themes; 1) diagnosis and treatment, 2) form of education and 3) age, financial challenges and legal entitlements. Results Across the empirical material, we found that AYAs’ cancer experience was heterogeneous. The needs of AYAs differed according to 1) diagnosis and treatment, 2) type of education and 3) age, financial situation and legal entitlements. The findings demonstrate a need for a tailored intervention accommodating the variety of opportunities, requirements and challenges of AYAs with cancer. We propose an intervention consisting of a multidisciplinary team sited at the hospital where the individual AYA receives treatment. The team’s main task will be to maintain AYAs’ social competences and ease their return to everyday life after serious illness by balancing educational requirements with cancer treatment. Conclusion Based on the perspectives of practitioners and AYAs affected by cancer, this study outlines an intervention designed as a care pathway in which a multidisciplinary team provides individual and tailored support to AYAs with cancer from the time of diagnosis during and beyond active cancer treatment.

Simple Summary: Adolescents and young adults (AYA) with cancer often fall through gaps between children's and adults' cancer services. They are consequently under-represented in clinical trials, and their survival is often inferior to that of children or adults with the same tumor type; in this paper, we use the example of central nervous system germ cell tumors (CNS-GCT), as a model of AYA tumor to illustrate this challenge. We describe how we have built bridges between pediatric and adult oncology, how this can apply to other types of brain tumors, and discuss ways to promote cancer care in the AYA population. Adolescents and young adults (AYA) with cancer are under-represented in clinical trials and have thus not benefited from the same improvement in outcomes as either younger or older patients. Central nervous system germ cell tumors (CNS-GCT) represent an ideal model of AYA tumor as their incidence peaks during adolescence and young adulthood. Since the early 90's, SIOP (International Society of Pediatric Oncology) has launched two successive European trials: SIOP CNS-GCT96 (January 1996 to December 2005) and SIOP CNS-GCTII protocols (October 2011 to July 2018), for CNSGCTs. With the removal of the upper age limit in the SIOP CNS-GCTII trial, and closer collaboration between pediatric and adult oncologists within AYA multidisciplinary tumor boards, the proportion of adults enrolled in France has dramatically increased over time. The current article will use the example of CNS-GCT to illustrate how to build a bridge between pediatric and adult oncology, how this can apply to other types of brain tumors, and how to promote cancer care in the AYA population. [ABSTRACT FROM AUTHOR]

We aimed to identify miRNAs and pathways specifically deregulated in adolescent and young adult (AYA) T-ALL patients. Small RNA-seq showed no major differences between AYA and pediatric T-ALL, but it revealed downregulation of miR-143-3p in T-ALL patients. Prediction algorithms identified several known and putative oncogenes targeted by this miRNA, including KRAS, FGF1, and FGF9. Pathway analysis indicated signaling pathways related to cell growth and proliferation, including FGFR signaling and PI3K-AKT signaling, with the majority of genes overrepresented in these pathways being predicted targets of hsa-miR-143-3p. By luciferase reporter assays, we validated direct interactions of this miRNA with KRAS, FGF1 and FGF9. In cell proliferation assays, we showed reduction of cell growth upon miR-143-3p overexpression in two T-ALL cell lines. Our study is the first description of the miRNA transcriptome in AYA T-ALL patients and the first report on tumor suppressor potential of miR-143-3p in T-ALL. Downregulation of this miRNA in T-ALL patients might contribute to enhanced growth and viability of leukemic cells. We also discuss the potential role of miR-143-3p in FGFR signaling. Although this requires more extensive validation, it might be an interesting direction, since FGFR inhibition proved promising in preclinical studies in various cancers. [ABSTRACT FROM AUTHOR]

Simple Summary: Insomnia symptoms and daytime fatigue significantly impact physical and psychosocial health. While these are common symptoms in pediatric oncology, relationships between these symptoms remain unclear. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia and daytime fatigue symptoms, and associated risk factors in adolescent/young adult childhood cancer patients in follow-up after treatment. Results showed that around forty percent had insomnia and daytime fatigue symptoms, which often co-occurred. Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia–fatigue and fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), and lower educational level and consistent bedtimes (insomnia–fatigue). Overall, insomnia symptoms and daytime fatigue were common and often co-occurred in this patient population. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention. Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia–daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n = 565, 12–26 years old, ≥6 months after treatment) participated in a national, cross-sectional questionnaire study, measuring insomnia symptoms (ISI; Insomnia Severity Index) and daytime fatigue (single item). Prevalence rates of insomnia and/or daytime fatigue subgroups and ISI severity ranges were calculated. Multinomial regression models were applied to assess risk factors. Most patients reported no insomnia symptoms or daytime fatigue (61.8%). In the 38.2% of patients who had symptoms, 48.1% reported insomnia and daytime fatigue, 34.7% insomnia only, and 17.1% daytime fatigue only. Insomnia scores were higher in patients with insomnia–daytime fatigue compared to insomnia only (p < 0.001). Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia–fatigue/fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), lower educational level and consistent bedtimes (insomnia–fatigue). Insomnia symptoms and daytime fatigue are common and often co-occur. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYA) with cancer often fall through gaps between children’s and adults’ cancer services. They are consequently under-represented in clinical trials, and their survival is often inferior to that of children or adults with the same tumor type; in this paper, we use the example of central nervous system germ cell tumors (CNS-GCT), as a model of AYA tumor to illustrate this challenge. We describe how we have built bridges between pediatric and adult oncology, how this can apply to other types of brain tumors, and discuss ways to promote cancer care in the AYA population.Adolescents and young adults (AYA) with cancer are under-represented in clinical trials and have thus not benefited from the same improvement in outcomes as either younger or older patients. Central nervous system germ cell tumors (CNS-GCT) represent an ideal model of AYA tumor as their incidence peaks during adolescence and young adulthood. Since the early 90’s, SIOP (International Society of Pediatric Oncology) has launched two successive European trials: SIOP CNS-GCT96 (January 1996 to December 2005) and SIOP CNS-GCTII protocols (October 2011 to July 2018), for CNS-GCTs. With the removal of the upper age limit in the SIOP CNS-GCTII trial, and closer collaboration between pediatric and adult oncologists within AYA multidisciplinary tumor boards, the proportion of adults enrolled in France has dramatically increased over time. The current article will use the example of CNS-GCT to illustrate how to build a bridge between pediatric and adult oncology, how this can apply to other types of brain tumors, and how to promote cancer care in the AYA population.

Abstract Background Intensive acute lymphoblastic leukemia (ALL) regimens in children improve the 5-year event-free survival (EFS) to reach ~ 90%. Adolescents and young adults (AYA) have EFS (30% to 45%). Young AYA ALL patients treated with pediatric chemotherapy protocols such as Dana Farber Consortium Protocol (DFCP) experience a better prognosis. This study aimed to assess the efficacy [EFS and overall survival (OS)] and the toxicity of DFCP in the treatment of Egyptian AYA with newly diagnosed ALL. A retrospective study was performed on 41 patients with newly diagnosed ALL (15 and 39 years) who were treated with DFCP. EFS and OS were estimated using the Kaplan-Meier method. Results Thirty-eight patients (92.68%) achieved complete remission (CR). Eleven patients (26.83%) relapsed. Ten (24.39%) patients died. One, two, and three years of EFS were 75.61%, 72.91%, and 67.51% respectively. One, two, and three years OS were 85.3%, 77.26%, and 74.39% respectively. Neutropenia was the most common adverse event observed in 100% of patients. Conclusion DFCP can be considered as an effective ALL protocol for the AYA group of patients with good CR, EFS, and OS rates. DFCP seemed to be feasible in AYA despite the toxicities experienced.

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers. [ABSTRACT FROM AUTHOR]

Introduction: SCD patients experience declines in health-related quality of life (HRQOL) domains compared with healthy controls. Despite evidence supporting the benefits of hydroxyurea, medication non-adherence remains problematic, especially in adolescents and young adults (AYA). Adherence barriers include forgetfulness and lack of knowledge. Recently, increased interest in technology-based strategies to improve medication adherence has emerged. No data currently exists on hydroxyurea adherence, HRQOL or perceptions of technology-based tools in the Irish SCD population. Methods: In order to interrogate these domains among Irish AYA SCD patients we administered an anonymous survey at two tertiary referral centres in Dublin, Ireland, in July 2019. Results: Sixty-three patients participated; 63% female and 37% male, with a median and mean age of 17 and 19 years, respectively. Average monthly adherence was 76% using a visual analogue scale. Recall barriers were present in 62% while 26% omit hydroxyurea for reasons other than forgetting. Reviewing HRQOL; only 36.5% felt always physically able to engage in recreational activities, while 51% experienced disruption to school/college/work due to pain. Eighty-one percent reported that anxiety about health interferes with their lives and non-adherence correlated with worse HRQOL outcomes. Interest in a smartphone app was expressed by the majority, with daily medication reminders being the most popular feature. Sharing adherence data with doctors and discussion forums were less appealing. Conclusions: Representing over 10% of the Irish SCD population, our survey provides novel and valuable insights into medication adherence and HRQOL domains. Preferred app features may inform future technology-based interventions to improve medication adherence in SCD and other chronic health conditions. [ABSTRACT FROM AUTHOR]

Psychosocial distress is highly prevalent in cancer patients, approaching rates around 40% across various cancer sites according to multicenter studies. As such, distress screening procedures have been developed and implemented to identify and respond to cancer patients' psychosocial distress and concerns. However, many cancer patients continue to report unmet psychosocial needs suggesting gaps in connecting patients with psychosocial services. Presently, there is a paucity of research examining sex-based disparities in referral rates to behavioral oncology services, particularly for adolescent and young adult (AYA) cancer patients. Informed by gender role conflict and empirical literature documenting disparities in cancer care and treatment based on a variety of sociocultural variables, this study aimed to examine the presence of sex disparities in referral rates to behavioral oncology services for AYA cancer patients. Data for this study consisted of 1,700 AYA cancer patients (age 18–39) who completed a distress screening at a large cancer center of a teaching hospital in the Midwestern United. Results indicated that patient sex significantly predicted the odds of behavioral oncology referral (γ50 = −0.95, Odds ratio = 2.60, p < 0.001). This finding indicates that female AYA cancer patients are 2.5 times more likely to be referred to behavioral oncology services compared to male AYA cancer patients after controlling for psychosocial distress and emotional, family, and practical problems. Additionally, we found that emotional problems significantly moderated the odds of referral for males and females (γ60 = 0.37, Odds ratio = 1.44, p < 0.001), however the odds of referral for males who endorsed emotional problems were lower than males who did not endorse emotional problems. This contrasted with female AYA cancer patients where the endorsement of emotional problems increased the odds of referral to behavioral oncology services. Findings are discussed with particular focus on how to enhance equitable care and reduce sex and other sociocultural-based disparities in AYA psychosocial oncology. [ABSTRACT FROM AUTHOR]

Background: In Denmark, around 500 adolescents and young adults (AYAs) aged 15-29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, however, not currently being adequately met. This study explores the distinctive needs of AYAs aged 15-25 and affected by cancer with the aim of developing and designing an intervention that accommodates these needs and allows AYAs to pursue everyday life following active cancer treatment.Methods: We combined multiple qualitative methods to conduct six sub-studies: 1) participant observation among support groups for AYAs affected by cancer, 2) field visit at a large Danish hospital, 3) qualitative interviews with AYAs currently or previously diagnosed with cancer, 4) qualitative interviews with practitioners working with young cancer patients or AYAs with chronic conditions, 5) an interactive workshop with practitioners, and 6) an interactive workshop with AYAs. The empirical material was collected between May 2016 and April 2019. The empirical material was read, analysed thematically and coded into the themes; 1) diagnosis and treatment, 2) form of education and 3) age, financial challenges and legal entitlements.Results: Across the empirical material, we found that AYAs' cancer experience was heterogeneous. The needs of AYAs differed according to 1) diagnosis and treatment, 2) type of education and 3) age, financial situation and legal entitlements. The findings demonstrate a need for a tailored intervention accommodating the variety of opportunities, requirements and challenges of AYAs with cancer. We propose an intervention consisting of a multidisciplinary team sited at the hospital where the individual AYA receives treatment. The team's main task will be to maintain AYAs' social competences and ease their return to everyday life after serious illness by balancing educational requirements with cancer treatment.Conclusion: Based on the perspectives of practitioners and AYAs affected by cancer, this study outlines an intervention designed as a care pathway in which a multidisciplinary team provides individual and tailored support to AYAs with cancer from the time of diagnosis during and beyond active cancer treatment. [ABSTRACT FROM AUTHOR]

This study examined emergency department (ED) utilization by adolescents and young adults, 12–30 years of age (AYA) with autism spectrum disorder (ASD) using the 2016 Healthcare Cost and Utilization Project/National Emergency Department Sample (HCUP/NEDS). We investigated the principal reason for an ED visit, presence of an ambulatory care sensitive condition (ACSC), and likelihood of hospital admission following ED encounter in ASD and Non-ASD cohorts. The ASD cohort had a higher proportion of ED visits for ACSC diagnoses as compared to the Non-ASD cohort. In addition, the likelihood of admission following an ED visit in the ASD cohort was 3.7 times greater than in the Non-ASD cohort. [ABSTRACT FROM AUTHOR]

• Our study is the first to validate the distinct distribution of brain tumor types in the Adolescent and Young adult group in our environment. • Headache was the most common symptom at presentation, with a long median duration of symptoms prior to presentation. • Ataxia was the only symptom that was significantly associated with Age group. • Glioma of all types and grade remain the most common tumor type. Adolescents and Young Adults (AYA), have distinct endocrine and psychosocial peculiarities. Brain tumors occur less among AYAs, compared to other age groups and with better prognosis. There is however a paucity of literature about brain tumors in AYA in sub-Saharan Africa. We aim to describe the clinical characteristics of brain tumors in AYA across five neurosurgical centers in Nigeria and the associated factors. We report results for older children (10–14 years), adolescents (15–19 years) and young adults (20–24 years). This was a retrospective review of AYA with brain tumors over a 10-year period (2010–2019). Data analysis was by descriptive statistics, Chi square test and multinomial regression at α0.05. There were 104 AYAand the male to female ratio was 1.2:1. Headache (79.8%) and visual symptoms (65.4%) were the most common presenting symptoms. Focal limb weakness (44.1%) occurred less frequently. Median duration of symptoms prior to presentation was 9 months. Glioma was the most common tumor (31, 29.8%) while pituitary adenoma and craniopharyngioma constituted 30.8% of the tumors. Patients with symptom duration of ≤one year were more likely to have infratentorial tumors. There was no significant association between the KPS following intervention and the AYA characteristics. Age group was not significantly associated with any of the presenting symptoms except ataxia, which was significantly higher among the 10 to 14 years group.We have described the epidemiology of brain tumors within AYA in Nigeria and highlighted a need to maximize their care and meet their special needs. [ABSTRACT FROM AUTHOR]

Neurofibromatosis type 1 (NF1) is a genetic syndrome affecting about 1 in 3500 individuals; many of those affected have plexiform neurofibroma (pNF) tumors and associated symptoms and complications. Furthermore, learning and attention problems, as well as deficits in adaptive functioning, are common, often beginning in early childhood. This study aimed to describe adaptive functioning and to examine relationships between adaptive functioning and cognitive and academic variables and level of independence among adolescents and young adults (AYA) with NF1 and pNF tumors. Fifty‐five AYA aged 16–31 years participated in a series of neuropsychological evaluations while parents completed the Vineland Adaptive Behavior Scales (VABS‐II) as part of a larger natural history study. Over one‐third (35%) of AYA were neither in school nor employed. Mean VABS‐II daily living and socialization scores were low average while mean Verbal and Performance IQ scores were average. VABS‐II scores were positively correlated with processing speed, executive functioning, and working memory scores. Verbal IQ was the only significant predictor of work/school status. Identification of the correlates and predictors of adaptive functioning and life achievement can help guide healthcare providers with the early identification of risk factors and possible areas for intervention. [ABSTRACT FROM AUTHOR]

Psychosocial distress is highly prevalent in cancer patients, approaching rates around 40% across various cancer sites according to multicenter studies. As such, distress screening procedures have been developed and implemented to identify and respond to cancer patients' psychosocial distress and concerns. However, many cancer patients continue to report unmet psychosocial needs suggesting gaps in connecting patients with psychosocial services. Presently, there is a paucity of research examining sex-based disparities in referral rates to behavioral oncology services, particularly for adolescent and young adult (AYA) cancer patients. Informed by gender role conflict and empirical literature documenting disparities in cancer care and treatment based on a variety of sociocultural variables, this study aimed to examine the presence of sex disparities in referral rates to behavioral oncology services for AYA cancer patients. Data for this study consisted of 1,700 AYA cancer patients (age 18–39) who completed a distress screening at a large cancer center of a teaching hospital in the Midwestern United. Results indicated that patient sex significantly predicted the odds of behavioral oncology referral (γ50 = −0.95, Odds ratio = 2.60, p < 0.001). This finding indicates that female AYA cancer patients are 2.5 times more likely to be referred to behavioral oncology services compared to male AYA cancer patients after controlling for psychosocial distress and emotional, family, and practical problems. Additionally, we found that emotional problems significantly moderated the odds of referral for males and females (γ60 = 0.37, Odds ratio = 1.44, p < 0.001), however the odds of referral for males who endorsed emotional problems were lower than males who did not endorse emotional problems. This contrasted with female AYA cancer patients where the endorsement of emotional problems increased the odds of referral to behavioral oncology services. Findings are discussed with particular focus on how to enhance equitable care and reduce sex and other sociocultural-based disparities in AYA psychosocial oncology.

Background: Health literacy may influence the transition from pediatric care to adult care in adolescents with sickle cell disease (SCD). It is postulated that one influencing factor of health literacy in adolescents with SCD is health-seeking behavior. The purpose of this study was twofold: (1) to explore health-seeking behaviors of adolescents with SCD and (2) to determine if there are significant differences in health literacy levels of adolescents with SCD based upon health-seeking behaviors. Methods: This was a cross-sectional, descriptive study evaluating health-seeking behaviors and health literacy in 110 Black and non-Hispanic adolescents with SCD. Convenience sampling was utilized for recruitment. The inclusion criteria were a diagnosis of one of the four primary genotypes of SCD and age of 10-19 years. Health literacy was evaluated using the Newest Vital Sign (NVS). Frequencies and percentages were calculated for all variables. Independent Samples t -tests were conducted to evaluate differences in health literacy scores based upon differing health-seeking behaviors. Results: The mean age of participants was 14.8 years (SD = 2.2). The mean NVS score was 2.7 (SD = 1.6). The two most common responses to "where do you go FIRST for health information?" were the Internet (29.6%; n = 40) and health care providers (27.4%; n = 37). There was no statistical difference in NVS scores between adolescents using the Internet versus health care providers as their first source of health information (t [75] = −.12; p =.22). Discussion: Knowledge of health-seeking behaviors and health literacy in adolescents with SCD gives insight into the design and evaluation of future interventions to improve health and health literacy in this population. [ABSTRACT FROM AUTHOR]

Background: Intensive acute lymphoblastic leukemia (ALL) regimens in children improve the 5-year event-free survival (EFS) to reach ~ 90%. Adolescents and young adults (AYA) have EFS (30% to 45%). Young AYA ALL patients treated with pediatric chemotherapy protocols such as Dana Farber Consortium Protocol (DFCP) experience a better prognosis. This study aimed to assess the efficacy [EFS and overall survival (OS)] and the toxicity of DFCP in the treatment of Egyptian AYA with newly diagnosed ALL. A retrospective study was performed on 41 patients with newly diagnosed ALL (15 and 39 years) who were treated with DFCP. EFS and OS were estimated using the Kaplan-Meier method. Results: Thirty-eight patients (92.68%) achieved complete remission (CR). Eleven patients (26.83%) relapsed. Ten (24.39%) patients died. One, two, and three years of EFS were 75.61%, 72.91%, and 67.51% respectively. One, two, and three years OS were 85.3%, 77.26%, and 74.39% respectively. Neutropenia was the most common adverse event observed in 100% of patients. Conclusion: DFCP can be considered as an effective ALL protocol for the AYA group of patients with good CR, EFS, and OS rates. DFCP seemed to be feasible in AYA despite the toxicities experienced. [ABSTRACT FROM AUTHOR]

Purpose of Review: Adolescents and young adults (AYAs) with cancer are a vulnerable population with unique needs that are under-recognized and often overlooked by healthcare providers. This review focuses on identifying and meeting some of those needs including adherence to treatment, financial implications, impact on fertility and intimacy, issues with work/school, isolation, challenges with re-entry, and long-term side effects and survivorship. Recent Findings: Survival rates have not improved in adolescents and young adults with cancer at the same rate as in children and older adults (the so called "AYA gap"). Restricted or delayed access to care and inconsistent cancer treatment and follow-up care contribute to this. Importantly, fertility preservation options have broadened and efforts to provide age appropriate counseling prior to treatment have improved. Additionally, AYAs face a variety of psychosocial issues while dealing with a cancer diagnosis during critical developmental years, and yet data pertaining to the successful identification and management of these issues is lacking. As a result, there has been recent increasing awareness that this patient population warrants strong advocates, additional research, and requires age group specific resources to be successful in navigating their cancer experience during treatment and into survivorship care. Summary: Members of the healthcare team should familiarize themselves with the unique needs of AYA cancer patients to provide optimal patient care. In order to build upon early progress, this group calls for additional study particularly when it comes to barriers to enrollment for AYA-specific research (including clinical trials), recognizing psychosocial needs (both during and after treatment), transition planning for returning to life after cancer, and managing long-term effects of treatment (including neuro cognitive changes). In addition, access to financial resources and appropriate mental health support needs to be improved. [ABSTRACT FROM AUTHOR]

Background: Patients with inflammatory bowel diseases (IBDs) are more likely to have depression and anxiety symptoms compared with healthy individuals and those with other chronic illnesses. Previous studies have shown a link between the microbiome composition and depression symptoms; however, many antidepressant medications have antibacterial activity confounding cross-sectional studies of these populations. Therefore, we aimed to determine whether we could detect longitudinal changes in the microbiome of a subset of patients who participated in a previously published mindfulness-based cognitive therapy (MBCT) study to improve depression symptoms in adolescents and young adults with IBD., Methods: Stool samples were collected at baseline and 8 weeks (n = 24 participants, 37 total samples, 13 paired samples). During this time, some participants achieved a 50% reduction in their depression symptoms either through MBCT or treatment as usual with their mental health team (responders). The microbiome composition and function of responders were compared with participants who did not improve their depression scores (nonresponders). Depression scores were determined using the depression, anxiety, and stress score (DASS-21), and metagenomic sequencing of stool samples was performed., Results: No difference in alpha diversity was found between responders and nonresponders. Beta diversity measures were similarly unchanged. Clinical features including fecal calprotectin, C-reactive protein, and serum IL-6 levels were unchanged., Conclusions: In this small longitudinal study, we were not able to detect longitudinal changes in the microbiome associated with improvement in depression scores. Follow-up studies that are sufficiently powered to detect changes in the microbiome are required to confirm our results., (© 2024 Crohn’s & Colitis Foundation. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation.)

Introduction: Participation on a collaborative team is an attractive option for conducting research, especially in pediatric hematology/oncology nursing, where the patient population is small. The Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CS2AYAC) is a nursing research team that has been in existence for over a decade. Purpose: The authors share the process by which CS2AYAC formed and describe key features that contribute to its sustainability. Results: While the team developed organically rather than via the tenets of team science, key aspects of success include principles related to mentorship, communication, building trust, establishing shared goals, and managing conflict. Conclusions: This description of one team's experience may help other nurses build their own teams for research. Strong, collaborative research teams will advance pediatric hematology/oncology nursing science and scholarship and can be an important source of collegiality and support. [ABSTRACT FROM AUTHOR]

The aim of this study was to extensively describe the epidemiological, clinical and therapeutic outcomes of adolescents and young adults (AYA) population with classical Hodgkin Lymphoma (cHL). Then, a comparison between AYAs and adults and between the subgroups of AYAs treated with the same adult protocol was accomplished to further inform on optimal therapy approach of choice for adolescent patients. In this mono-centric, retrospective study, we reviewed the medical records. We analyzed 112 consecutive North Tunisian patients, including 66 AYAs (15 to 39 years) and 46 adults (≥ 40 years) affected by cHL treated from 2000 to 2015 at Salah Azaiez Institute. Then, we performed a comparative analysis between AYA and 46 adult patients and a subgroup analysis between adolescents and young adults. All patients were treated according to the national protocol for HL, edited by the Tunisian Society of Hematology. The treatment included chemotherapy and involved-field radiotherapy (RT) at a dose of 20 or 30 Grays (Gy) for responders and 36 Gy for non-responders. AYA patients presented with adverse features with nodular sclerosis subtype (p = 3.88 × 10−02) and mediastinal mass involvement (p = 9.40 × 10−04). At a median follow-up of 51 and 32 months for AYAs and adults, respectively, no statistical difference in terms of 3 and 5-years overall survival (OS) and event-free survival (EFS) was shown. Using the Kaplan-Meier method, in AYAs, the ABVD regimen has an impact on 3-years EFS (p = 4.63 × 10−02). The 36 Gy RT was associated with the best 3-years EFS (p = 9.24 × 10−03). Besides, AYA patients with advanced-stage had the worst 3-years OS (76%) (p = 2.41 × 10−02). Although the adolescents and young adults shared similar clinical presentation, we noted that the adolescent group had the worst 3-years EFS (48%), but the best 3-years OS (91%). We identified 15% of primary refractory patients and a rate of toxicity of 5.3% in AYA. The treatment approach used is well tolerated by adult patients. However, the AYA patients and particularly adolescent subgroup had more advanced disease at diagnosis and should be treated more intensively in dedicated units. RT dose < 36 Gy and ABVD chemotherapy were associated with lower EFS in this population. [ABSTRACT FROM AUTHOR]

Introduction: Medulloblastoma is a malignant embryonal tumor of the cerebellum that occurs predominantly in children. To find germline genetic variants associated with medulloblastoma risk, we conducted a genome-wide association study (GWAS) including 244 medulloblastoma cases and 247 control subjects from Sweden and Denmark. Methods: Genotyping was performed using Illumina BeadChips, and untyped variants were imputed using IMPUTE2. Results: Fifty-nine variants in 11 loci were associated with increased medulloblastoma risk (p < 1 × 10–5), but none were statistically significant after adjusting for multiple testing (p < 5 × 10–8). Thirteen of these variants were genotyped, whereas 46 were imputed. Genotyped variants were further investigated in a validation study comprising 249 medulloblastoma cases and 629 control subjects. In the validation study, rs78021424 (18p11.23, PTPRM) was associated with medulloblastoma risk with OR in the same direction as in the discovery cohort (ORT = 1.59, pvalidation = 0.02). We also selected seven medulloblastoma predisposition genes for investigation using a candidate gene approach: APC, BRCA2, PALB2, PTCH1, SUFU, TP53, and GPR161. The strongest evidence for association was found for rs201458864 (PALB2, ORT = 3.76, p = 3.2 × 10–4) and rs79036813 (PTCH1, ORA = 0.42, p = 2.6 × 10–3). Conclusion: The results of this study, including a novel potential medulloblastoma risk loci at 18p11.23, are suggestive but need further validation in independent cohorts. [ABSTRACT FROM AUTHOR]

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

Background: The transition from pediatric to adult healthcare is a vulnerable time for adolescents and young adults (AYA), especially those with chronic conditions. Successful transition requires communication and coordination amongst providers, patients, and families. Unfortunately, multiple studies have demonstrated that the majority of practicing providers do not feel prepared to help AYA patients through health care transition, but little is known about the transition/transfer aptitudes of physician trainees. Objectives: The purpose of this study was to establish the transition/transfer training that residents and fellows from different fields receive – and determine what training factors are associated with increased confidence in core transition/transfer skills. Design: A 20-item electronic survey regarding experiences caring for AYA patients was sent to all 2014–2015 graduate medical education (GME) trainees at our institution. Results: Forty-nine percent (479/985) of trainees responded: 60 pediatric, 387 non-pediatric, and 32 ‘combined’ (e.g., Medicine/Pediatrics or Family Medicine). Trainees from all three categories of programs reported similar exposure to AYA patients with chronic conditions, with a median of 1–3 encounters per month. A quarter of trainees rated themselves as ‘not at all prepared’ to speak with a counterpart provider about a transferring patient, while nearly half of trainees considered themselves ‘not at all prepared’ to speak with a patient and family about transition. Trainee confidence in performing these two skills was strongly predicted by three factors: increased exposure to AYA with chronic conditions, education (training or role modeling) in transition skills, and experience practicing transition skills. Of these, the strongest association with trainee confidence was experience practicing the skills of communicating with other providers (OR = 13.0) or with patients/families (OR = 14.5). Conclusion: Despite at least monthly encounters with AYA with chronic conditions, most residents and fellows have very little experience communicating across the pediatric-to-adult healthcare divide, highlighting training opportunities in graduate medical education.

Background: The transition from pediatric to adult healthcare is a vulnerable time for adolescents and young adults (AYA), especially those with chronic conditions. Successful transition requires communication and coordination amongst providers, patients, and families. Unfortunately, multiple studies have demonstrated that the majority of practicing providers do not feel prepared to help AYA patients through health care transition, but little is known about the transition/transfer aptitudes of physician trainees. Objectives: The purpose of this study was to establish the transition/transfer training that residents and fellows from different fields receive – and determine what training factors are associated with increased confidence in core transition/transfer skills. Design: A 20-item electronic survey regarding experiences caring for AYA patients was sent to all 2014–2015 graduate medical education (GME) trainees at our institution. Results: Forty-nine percent (479/985) of trainees responded: 60 pediatric, 387 non-pediatric, and 32 'combined' (e.g., Medicine/Pediatrics or Family Medicine). Trainees from all three categories of programs reported similar exposure to AYA patients with chronic conditions, with a median of 1–3 encounters per month. A quarter of trainees rated themselves as 'not at all prepared' to speak with a counterpart provider about a transferring patient, while nearly half of trainees considered themselves 'not at all prepared' to speak with a patient and family about transition. Trainee confidence in performing these two skills was strongly predicted by three factors: increased exposure to AYA with chronic conditions, education (training or role modeling) in transition skills, and experience practicing transition skills. Of these, the strongest association with trainee confidence was experience practicing the skills of communicating with other providers (OR = 13.0) or with patients/families (OR = 14.5). Conclusion: Despite at least monthly encounters with AYA with chronic conditions, most residents and fellows have very little experience communicating across the pediatric-to-adult healthcare divide, highlighting training opportunities in graduate medical education. [ABSTRACT FROM AUTHOR]

For individuals with sickle cell disease (SCD), mild to moderate exercise is advised, but self-regulation of these intensities is difficult. To regulate intensity, one SCD recommendation is to stop exercising at the first perception of fatigue. However, perceived effort and affect (how one feels) are perceptual cues that are commonly used to guide exercise intensity. This study (a) examined perceived effort, affect, and fatigue in relation to metabolic state (gas exchange) in adolescents and young adults (AYAs) with SCD, (b) explored guidelines AYAs use to self-regulate exercise, and (c) compared perceived effort and affect at gas exchange threshold (GET) with healthy counterparts. Twenty-two AYAs with SCD completed an incremental cycle test. Perceived effort, affect, and fatigue were assessed every 2 minutes. A mixed-effects linear model was conducted to model changes in effort, affect, and fatigue across time. Mean scores of effort and affect at GET were compared with published data of healthy counterparts. Participants were queried about self-regulation exercise strategies. Findings indicated that both perceived fatigue and effort at GET was lower than expected. Perceived effort was lower (p <.0001), and perceived affect was significantly higher (p =.0009) than healthy counterparts. Interviews revealed that most participants (95%) do not stop exercising until fatigue is moderate to severe, and many (73%) do not stop until symptoms are severe (chest tightness, blurry vision). Nurses should review guidelines for safe exercise with AYAs with SCD. Exercise training may be beneficial to AYAs with SCD for learning how to interpret bodily responses to exercise to improve self-regulation. [ABSTRACT FROM AUTHOR]

Background: Cancer is rare among adolescents and young adults (AYA). Affected persons need generation-specific attention and care; however, no nationwide study has investigated the medical care structure for AYA cancer treatment in Japan.Methods: We conducted a nationwide survey of AYA cancer for frequency of AYA patients, type of cancer, medical facilities, and certified cancer professionals. Data were collected from 14,713 patients at 218 Core Cancer Treatment Hospitals.Results: The average proportion of AYA cancer patients to all cancer patients was 3.6%. The median number of patients aged 15 to 24 years per hospital was small (n = 5, range 1-51). The most frequent primary site of AYA cancer was the cervix uteri, but when cancer in situ was excluded, the hematopoietic malignancies were the most frequent cancer in males and females aged 15-24 years. In the age group 25-39 years, testicular and breast cancers were the most frequent cancers in males and females, respectively. Certified cancer professionals and facilities are necessary for appropriate care of AYA cancer patients, but the availability of such professionals varied greatly among hospitals. Hospitals with few AYA cancer patients were less likely to employ such physicians.Conclusions: The present findings suggest that medical care for AYA cancer in Japan requires further refinement and a multidisciplinary approach. [ABSTRACT FROM AUTHOR]

The purpose of this article is to discuss the use of the Newest Vital Sign (NVS) health literacy instrument in adolescents with sickle cell disease. The NVS evaluates both literacy and numeracy (the ability to understand and work with numbers) as well as the ability to locate and apply information. It is important to validate the NVS for use in adolescents, as the only currently validated instrument, the Rapid Estimate of Adolescent Literacy in Medicine–Teen (REALM-Teen), does not measure numeracy or the ability to locate or apply information. This cross-sectional, descriptive, exploratory correlational study included appraisal of data from completion of the REALM-Teen and NVS instruments by a convenience sample of 75 adolescents with sickle cell disease. The mean age of this study sample was 14.7 years (SD = 2.2). The mean grade level of participants was 8.7 (SD = 2.2). Internal consistency for the NVS in this population was acceptable (α = .63). Criterion validity was based on correlations between raw scores on the NVS and raw scores on the REALM-Teen. There was a significant moderate, positive correlation between NVS and REALM-Teen scores (r = .38, p < .01), demonstrating good criterion validity. Preliminary evidence for reliability and validity of the NVS in this population was established. [ABSTRACT FROM AUTHOR]