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Plain English Summary Currently, more and more collaborations exist between patients and researchers in scientific research projects. Patient-research partnerships give patients the opportunity to add value to research by sharing their own experiences. Besides, patients themselves feel heard in their needs and are empowered. However, inclusion of young patients, like young adults with a cancer diagnosis, remains limited in research itself and specifically in the form of active involvement and collaboration initiatives. Thereby little is known about their age-specific problems and needs. This seems especially the case in young patient populations like adolescents and young adults (AYAs) with cancer who have a poor or uncertain prognosis. By analyzing the experiences of AYAs and researchers, this study aimed to unravel if collaboration within research projects is possible, and what defines the added value of such collaboration. Our study shows that researchers, as well as AYAs, think positively about collaborating during most phases of scientific research projects, even for challenging populations like AYAs with an uncertain and/or poor prognosis. Creating awareness of the possibilities of AYA involvement might increase involvement initiatives in future projects. This can be done using the Involvement Matrix. This is an existing tool which we further expanded according to our findings. Researchers and AYAs can fill in this tool (a table) together to plan, structure and discuss their collaboration. Our findings can be validated and might serve as a starting point for other patient groups.

Introduction: Community engagement in research is widely accepted as best practice, despite gaps in existing frameworks to evaluate its process, context, and impact on research. The Screening in High Schools to Identify, Evaluate, and Lower Depression (SHIELD) study evaluated the use of a school-based major depressive disorder screening tool in the identification of symptoms and treatment initiation among adolescents, and was developed, implemented, and disseminated in partnership with a Stakeholder Advisory Board (SAB). We summarize outcomes of the evaluation strategy applied through our partnership with the SAB and explore gaps in the available engagement evaluation tools for mixed stakeholder populations including youth. Methods: SHIELD study SAB members (n = 13; adolescents, parents, mental health and primary care providers, and professionals from education and mental health organizations) advised on study design, implementation, and dissemination over a three-year period. Both SAB members and study team members (i.e., clinician researchers, project managers) were invited to quantitatively and qualitatively evaluate stakeholder engagement after each project year. At the conclusion of the study, SAB members and study team members were asked to evaluate the application of engagement principles in overall stakeholder engagement across the study period, using portions of the Research Engagement Survey Tool (REST). Results: SAB members and study team members responded similarly when evaluating engagement process (i.e., valued on team, voice represented); means ranged from 3.9 to 4.8 out of 5 points across all three project years. Reported engagement within study-specific engagement activities (i.e., meetings, study newsletter) varied from year to year, with some discrepancy between SAB member and study team evaluations. Using REST, SAB members reported the alignment of their experience with key engagement principles the same or higher than study team members. Qualitative feedback at the conclusion of the study generally matched quantitative measures; adolescent SAB members, however, reported disengagement from stakeholder activities that was not accurately or effectively captured in evaluation strategies employed across the study period. Conclusions: Challenges exist in effectively engaging stakeholders and evaluating their engagement, particularly among heterogenous groups that include youth. Evaluation gaps should be addressed through the development of validated instruments that quantify the process, context, and impact of stakeholder engagement on study outcomes. Consideration should be given to collecting parallel feedback from stakeholders and study team members to fully understand the application and execution of engagement strategy. Plain English Summary: We conducted a study (Screening in High Schools to Identify, Evaluate, and Lower Depression) to understand if an adolescent major depressive disorder screening tool delivered in the school setting aided in the identification of symptoms and treatment. We planned and conducted this study with the guidance of a stakeholders, including adolescents. At the end of each study year, we sent an evaluation survey to stakeholders to understand their experience, such as how appropriately the study included stakeholders and their perspectives. We also surveyed the team leading the study to understand their perspectives about stakeholder involvement. In general, both stakeholders and the study team reported feeling positive about stakeholder involvement; However, some stakeholders felt less involved as the study moved forward, and for some activities stakeholders and study team did not agree on how much the stakeholders were involved in study activities. Additionally, adolescent stakeholders reported low involvement in the study when completing the final evaluation, which, unfortunately, was not captured in the evaluations conducted in earlier study years. By evaluating the experiences of stakeholders, along with gathering perspectives of the study team, we were able to understand how well we involved stakeholders. However, additional questions remain unanswered, such as how best to involve adolescents as stakeholders, and how involving stakeholders impacted the results of our study. Evaluation tools to best understand these impacts are needed across the field of community-engaged research to answer these questions for future studies. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) in Haiti experience a high unintended pregnancy rate, in part due to unmet contraception needs. Little is known about AYA opinions of and experiences with contraception that may explain remaining gaps in coverage. We aimed to describe barriers and facilitators to contraception use among AYAs in Haiti. Methods: We conducted a cross-sectional survey and semi-structured qualitative interviews with a convenience sample of AYA females aged 14–24 in two rural communities in Haiti. The survey and semi-structured interviews assessed demographics, sexual health and pregnancy prevention behaviors and explored contraception opinions and experiences according to Theory of Planned Behavior constructs: attitudes, subjective norms, and perceived behavioral control. We used descriptive statistics to report means and responses to Likert scale and multiple-choice questions. Guided by content analysis, we analyzed interview transcripts through inductive coding and team debriefing. Results: Among 200 survey respondents, 94% reported any past vaginal sexual activity, and 43% reported ever being pregnant. A large majority were trying to avoid pregnancy (75%). At last sexual activity, 127 (64%) reported use of any contraceptive method; Among them, condoms were the most common method (80%). Among those with previous condom use, most reported use less than half the time (55%). AYAs were concerned about parental approval of birth control use (42%) and that their friends might think they are looking for sex (29%). About one-third felt uncomfortable going to a clinic to ask for birth control. In interviews, AYAs desired pregnancy prevention but frequently noted concerns about privacy and parental, community and healthcare provider judgement for seeking care for reproductive health needs. AYAs also noted a lack of contraception knowledge, evident by frequent misconceptions and associated fears. Conclusion: Among AYAs in rural Haiti, a large majority were sexually active and desire pregnancy avoidance, but few were using effective contraception due to numerous concerns, including privacy and fear of judgement. Future efforts should address these identified concerns to prevent unintended pregnancy and improve maternal and reproductive health outcomes in this population. [ABSTRACT FROM AUTHOR]

Background and Aim: Less attentions are paid into the adolescents and young adults (AYAs) diagnosed with gastric cancer (GC). Our study aims to explore incidence rate trend, death rate trend, and prognostic factors for overall survival (OS) and cancer‐specific survival (CSS) in AYAs with GC. Methods: A retrospective cohort study based on the Surveillance, Epidemiology, and End Results (SEER) database was performed. Joinpoint regression analysis was used to calculate average annual percent change (AAPC) with 95% confidence interval (CI) for incidence and death rate trends. Prognostic factors for OS and CSS were investigated using Cox proportional hazard model and gray test, respectively, with results shown as hazard ratio (HR) with 95% CI. Results: Although no statistical significance, incidence rate trend showed a tendency to an increase in AYAs (AAPC = 0.2, 95% CI: −0.2–0.6). All‐cause death rate trends were declined both in AYAs and middle‐aged and elderly people (MAEP), with AAPC value of −0.6 (95% CI: −0.8 to −0.5) and −0.5 (95% CI: −0.6 to −0.4), respectively. AYAs had a lower risk of all‐cause death (HR: 0.87, 95% CI: 0.84–0.90) but a higher risk of GC‐specific death (HR: 1.11, 95% CI: 1.07–1.15) than MAEP. Chemotherapy (HR: 1.27, 95% CI: 1.16–1.40) and intraoperative radiation (HR: 2.89, 95% CI: 1.13–7.37) were, respectively, identified as risk factors for worse OS and CSS in AYAs. Conclusions: AYAs had a higher risk of GC‐specific death, indicating more attention should be paid into AYAs with GC. [ABSTRACT FROM AUTHOR]

We assessed the quality of life and HIV adherence self-efficacy of adolescents and young adults (AYA) with perinatal HIV infection (PHIV). This cross-sectional study was conducted in Chiang Mai, Thailand. AYA-PHIV aged between 15 and 25 years were enrolled, who all were initiated on antiretroviral treatment as children. The World Health Organization-quality of life-BREF questionnaire and the HIV Treatment Adherence Self-Efficacy Scale (HIV-ASES) were administered. A total of 111 AYA-PHIV were included, including 52 (47%) females. Their median age was 20.2 ± 2.6 years. The overall QOL was rated as favorable (good or very good) by 59.4% of AYA-PHIV. The highest score was seen in the social relationships domain followed by the environmental health domain. Males had a significantly lower score in the psychological health domain than females (p = 0.018). Simple linear regression revealed a negative association between male sex, physical, and psychological health domain scores. The overall mean HIV–ASES score was 7.79 ± 1.96 out of 10, with a trend toward lower scores in males (p = 0.062), and a weak positive correlation with QOL. Our study documented worse QOL and lower HIV adherence self-efficacy in male AYA-PHIV. The findings call for the design of tailored male-focused interventions. [ABSTRACT FROM AUTHOR]

To examine whether demographic and cancer-related characteristics and factors such as fertility discussion with a medical provider and fertility preservation use are associated with attempting pregnancy after adolescent and young adult cancer. Cross-sectional online survey. Not applicable. Women with lymphoma, breast cancer, thyroid cancer, or gynecologic cancer diagnosed at 15–39 years from 2004 to 2016 were identified from the North Carolina Cancer Registry and the Kaiser Permanente Northern and Southern California health care systems and responded to an online survey addressing survivorship concerns, including fertility and reproductive outcomes. Demographic characteristics, cancer characteristics, fertility discussion with a medical provider or fertility specialist between cancer diagnosis and starting cancer treatment, use of fertility preservation strategies (freezing embryos or oocytes) after cancer diagnosis. Pregnancy attempt after cancer diagnosis, defined by either a pregnancy or 12 months of trying to become pregnant without pregnancy. Among 801 participants who had not reached their desired family size at diagnosis, 77% had a fertility discussion with any medical provider between cancer diagnosis and treatment initiation, and 8% used fertility preservation after cancer diagnosis. At survey (median =7 years after diagnosis; interquartile range, 4–10), 32% had attempted pregnancy. Neither fertility discussion with any medical provider nor fertility counseling with a fertility specialist was significantly associated with pregnancy attempts. However, the use of fertility preservation was significantly associated with attempting pregnancy (prevalence ratios = 1.74; 95% confidence interval: 1.31–2.32). Other characteristics positively associated with pregnancy attempts included younger age at diagnosis, longer time since diagnosis, having a partner (at diagnosis or at survey), and having a history of infertility before cancer diagnosis. Use of fertility preservation strategies was uncommon in our cohort but was associated with attempting pregnancy after cancer. Ensuring access to fertility preservation methods may help adolescent and young adult cancer survivors to plan and initiate future fertility. [ABSTRACT FROM AUTHOR]

To investigate the occult contralateral papillary thyroid carcinoma (PTC)-associated ultrasound (US) and clinical characteristics and establish a US-based model for the prediction of occult contralateral carcinoma in adolescents and young adults (AYAs) who were diagnosed with unilateral thyroid carcinoma preoperatively. From January 2015 to December 2020, patients who were diagnosed with unilateral thyroid carcinoma by preoperative US examination and underwent total thyroidectomy or thyroid lobectomy with more than 60 months of US follow-up at our hospital were retrospectively collected. Univariate and multivariate analyses were applied to identify the independent risk factors associated with occult contralateral PTC in AYAs, on which a prediction model was developed. The performance of the model was evaluated with accuracy, sensitivity, specificity, and the area under the receiver operating characteristic curve. Occult contralateral PTC was found in 91 of 365 (24.9%) PTC patients with a median age at diagnosis of 26 years (interquartile range, 24–29 years). The multivariate analysis indicated that the presence of contralateral benign nodule, intra-tumoral calcification, and intraglandular dissemination were significantly associated with occult contralateral PTC in AYAs. The prediction model, which incorporated all independent predictors, yielded an area under the receiver operating characteristic curve of.661 (95% CI:.602–.719). The accuracy, sensitivity and specificity were 67.9%, 54.9%, and 72.3%, respectively. The US-based prediction model proposed here exhibited a favorable performance for predicting occult contralateral PTC, which might be used to determine the appropriate extent of surgery for AYAs who had a preoperative diagnosis of unilateral thyroid carcinoma. [ABSTRACT FROM AUTHOR]

Adolescent and young adult (AYA) survivors of pediatric cancer and their caregivers frequently do not meet national guidelines for physical activity (PA), nutrition, or sleep. Respondents from N = 73 AYA-aged (mean [M] = 19.0 years, range = 11–30 years) survivor families completed a survey on cancer-related barriers to health behaviors. Almost all respondents (68/73, 93.2%) endorsed ≥1 cancer-specific barrier(s) to current health behaviors (median = 5, standard deviation = 3.42, range = 0–16) in their family. Cancer-related barriers to PA, nutrition, and sleep were positively correlated (PA-nutrition: r = 0.39, p = 0.001; PA-sleep: r = 0.41, p < 0.001; nutrition-sleep: r = 0.52, p < 0.001). Wellness interventions are needed to address the unique needs of AYA-aged survivors and support multiple health behaviors simultaneously. [ABSTRACT FROM AUTHOR]

Approximately 12% of adolescents in the USA live with a chronic health condition. Although youth with chronic illness visit healthcare providers more than healthy peers, pediatric subspecialty providers are less likely to address developmentally relevant concerns (e.g., reproductive health) with adolescents and young adults (AYA), particularly youth of color and/or youth in low-income communities. Despite the documented need for increased training, there remains a general lack of knowledge about pediatric subspecialty providers' training needs related to building their capacity to provide developmentally appropriate care to their adolescent and young adult patients. The present study describes an overall process for capacity-building to address the needs of diverse AYA patients with chronic medical conditions, built upon data representing key stakeholders and staff from 14 specialty care departments collected via quantitative surveys and focus groups. We describe the development of trainings for pediatric subspecialty providers from a large, urban, pediatric tertiary care center to address the health and psychosocial-related concerns of AYA living with chronic illness. We highlight valuable lessons from the capacity-building process in terms of increasing the ability of providers in a major pediatric healthcare center to provide developmentally appropriate care for AYA living with chronic illness. Finally, based on the results of our study, we provide recommendations on how to employ such a process in similar pediatric hospital settings. [ABSTRACT FROM AUTHOR]

Background: Eating disorders (EDs) are serious conditions predominantly affecting adolescents and young adults (AYAs) and pose a considerable threat to their health and wellbeing. Much of this increased morbidity and mortality is linked to medical compromise, especially cardiovascular abnormalities. Rates of presentation to both community and inpatient medical settings have increased in all age groups following the Covid-19 pandemic and subsequent "lockdowns", with patients presentations being more medically compromised compared to previous years. This has implications for clinicians with regard to the performance of competent cardiovascular assessments and management of findings. Aims: This paper is a practical resource for clinicians working with AYAs in whom EDs may present. It will provide a brief summary of the physiological context in which cardiovascular complications develop, systematically outline these complications and suggest a pragmatic approach to their clinical evaluation. Methods: Relevant literature, guidelines and academic texts were critically reviewed. Conclusions were extracted and verified by a Child and Adolescent Psychiatrist and Adolescent Paediatrician, with suitable expertise in this clinical cohort. Conclusions: The cardiovascular complications in EDs are primarily linked to malnutrition, and patients presenting with Anorexia Nervosa are most often at greatest risk of structural and functional cardiac abnormalities, including aberrations of heart rate and rhythm, haemodynamic changes and peripheral vascular abnormalities. Other cardiovascular abnormalities are secondary to electrolyte imbalances, as seen in patients with Bulimia Nervosa. More recently defined EDs including Avoidant/Restrictive Food Intake Disorder and Binge Eating Disorder are also likely associated with distinct cardiovascular complications though further research is required to clarify their nature and severity. Most cardiovascular abnormalities are fully reversible with nutritional restoration, and normalisation of eating behaviours, including the cessation of purging, though rare cases are linked to cardiac deaths. A detailed clinical enquiry accompanied by a thorough physical examination is imperative to ensure the medical safety of AYAs with EDs, and should be supported by an electrocardiogram and laboratory investigations. Consideration of cardiovascular issues, along with effective collaboration with acute medical teams allows community clinicians identify those at highest risk and minimise adverse outcomes in this cohort. Plain English summary: Eating disorders (EDs) are serious medical conditions predominantly affecting adolescents and young adults (AYAs). They are often associated with considerable threat to the patient's health and wellbeing, with Anorexia Nervosa (AN) having the second highest mortality rate of all mental disorders. The cardiovascular system, which includes the heart and blood vessels, is vulnerable to damage and may contribute to this. There are significant concerns that rates of EDs have been increasing, especially in adolescents. Following the onset of the Covid-19 pandemic and subsequent "lockdowns", there has been an increase in numbers of people of all ages attending community and acute medical settings. Furthermore, presentations are considered to be more medically unwell, with patients presenting with lower weights than previous years. This means that clinicians who might be assessing this group need to be competent in cardiovascular assessments of this cohort. The aim of this paper is to discuss the ways the cardiovascular system is affected in AYAs with various types of EDs, especially AN. The paper aims to provide advice to clinicians on how to assess and cardiovascular problems in this group. This practical summary should be useful to clinicians working in mental health community care who may be less familiar with treating potentially serious physical health problems. The most common cardiovascular issues in young people with low weight or weight loss include slow heart rates, low blood pressure, and problems with sudden changes in blood pressure which can result in fainting. Usually these problems resolve as the patient gains weight. However sometimes more serious changes in heart structure and function may occur and persist causing severe medical issues, like heart failure, which partly explains the high death-rate in AN. For this reason it is important that clinicians know how to spot cardiovascular problems in young people with AN and other EDs and provide them with the best medical care as soon as possible. [ABSTRACT FROM AUTHOR]

Background: The initial management of patients with sarcoma is a critical issue. We used the nationwide French National Cancer Institute-funded prospective sarcoma database NETSARC to report the management and oncologic outcomes in adolescents and young adults (AYAs) patients with sarcoma at the national level. Patients and methods: NETSARC database gathers regularly monitored and updated data from patients with sarcoma. NETSARC was queried for patients (15–30 years) with sarcoma diagnosed from 2010 to 2017 for whom tumor resection had been performed. We reported management, locoregional recurrence-free survival (LRFS), progression-free survival (PFS), and overall survival (OS) in AYA treated in French reference sarcoma centers (RSC) and outside RSC (non-RSC) and conducted multivariable survival analyses adjusted for classical prognostic factors. Results: Among 3,227 patients aged 15–30 years with sarcoma diagnosed between 2010 and 2017, the study included 2,227 patients with surgery data available, among whom 1,290 AYAs had been operated in RSC, and 937 AYAs in non-RSC. Significant differences in compliance to guidelines were observed including pre-treatment biopsy (RSC: 85.9%; non-RSC 48.1%), pre-treatment imaging (RSC: 86.8%; non-RSC: 56.5%) and R0 margins (RSC 57.6%; non-RSC: 20.2%) (p < 0.001). 3y-OS rates were 81.1% (95%CI 78.3–83.6) in AYA in RSC and 82.7% (95%CI 79.4–85.5) in AYA in non-RSC, respectively. Whereas no significant differences in OS was observed in AYAs treated in RSC and in non-RSC, LRFS and PFS were improved in AYAs treated in RSC compared to AYAs treated in non-RSC (Hazard Ratios (HR): 0.58 and 0.83, respectively). Conclusions: This study highlights the importance for AYA patients with sarcoma to be managed in national sarcoma reference centers involving multidisciplinary medical teams with paediatric and adult oncologists. [ABSTRACT FROM AUTHOR]

Introduction: In recent years, the relationship between academic burnout (AB) and problematic mobile phone use (PMPU) has become the hot issue of scholars, and a lot of related research has been carried out, but the results are different. Most studies showed that there was a significant positive correlation between AB and PMPU. However, some studies showed that the relationship between AB and PMPU was not significant. While this study aimed at exploring the relationship between AB and PMPU, as well as the influence of some moderating factors (region, age, gender, publication year, the measurement instrument) on them. Methods: According to the searching process for studies of PRISMA, we searched the related studies on AB and PMPU in Mainland China from January 2012 to November 2022 from CNKI, Wanfang Data, Chongqing VIP Information Co., Ltd. (VIP), Baidu scholar, ProQuest dissertations, Taylor & Francis, Springer, Web of Science, Google Scholar, EBSCO and PsyclNFO. Eventually, 50 studies were included in the meta-analysis, involving 38,488 subjects, with the sample size ranging from 193 to 2,260. CMA 3.0 was used to analyze the overall effect and test the moderating effect. Results: The result shows that the relationship between AB and PMPU can be considered as a moderate correlation (r=0.414, 95%CI [0.384, 0.443]), and moderator analysis shows that the relationship between AB and PMPU was moderated by the measurement instrument and publication year. Discussion: Specifically, when the Mobile Phone Addiction Tendency Scale and the Smartphone Addiction Scale for College Students were used as PMPU measurement tools, the correlation coefficients between AB and PMPU were higher. When the publication year was used as a moderating variable, the relationship between AB and PMPU increased over the years. [ABSTRACT FROM AUTHOR]

Objectives: The incidence of thyroid cancer (TC) is increasing in adolescent and young adult (AYA) patients. Many types of cancer diagnosed in the AYA age group differ significantly in clinical and pathological features from cancers diagnosed in older age groups, but data on TC are limited. Our aim was to compare the clinicopathological features of TC in AYAs and adults ≥40 years old. Materials and Methods: In total, 1013 patients with TC were retrospectively reviewed. Thyroid functions, ultrasonographic features of malignant nodules, cytological and histopathological findings, and recurrence and persistence rates were compared in AYAs and patients ≥40 years old. Results: There were 229 (22.61%) AYA patients and 784 (77.39%) patients ≥40 age group. Of all cancer types, 93.12% in AYAs and 93.58% in the ≥40 age group were papillary thyroid cancer (PTC) (p=0.772). Multifocal thyroid tumors were detected in 62 (27.07%) of AYAs and 269 (34.31%) of the ≥40 age group (p=0.039). Incidental thyroid tumors were detected in 113 (37.05%) of AYAs and 583 (52.01%) of the ≥40 age group (p<0.01). The extrathyroidal extension (ETE) was detected in 9.61% of AYAs and 16.33% of patients ≥40 years old (p=0.012). Capsular and vascular invasion, lymph node metastasis, distant metastasis, persistence, and recurrence rates were similar. Conclusion: There was no increase in the aggressive clinical and pathological features of TC in AYAs. ETE, multifocal tumors and incidental tumors were less common in AYAs than in patients ≥40 years old. PTC is the most common type in both groups, while the follicular variant PTC (FVPTC) subtype is increased in AYAs. Thyroid nodules should be carefully evaluated in AYAs, and diagnostic procedures should be recommended without delay. However, when TC is diagnosed in AYAs, the overtreatment potential of a disease with an excellent prognosis should also be considered. [ABSTRACT FROM AUTHOR]

Scholars of global health have embraced universal education as a structural intervention to prevent HIV. Yet the costs of school, including fees and other ancillary costs, create an economic burden for students and their families, indicating both the challenge of realising the potential of education for preventing HIV and the ways in which the desire for education may produce vulnerabilities to HIV for those struggling to afford it. To explore this paradox, this article draws from collaborative, team-based ethnographic research conducted from June to August 2019 in the Rakai district of Uganda. Respondents reported that education is the most significant cost burden faced by Ugandan families, sometimes amounting to as much as 66% of yearly household budgets per student. Respondents further understood paying for children's schooling as both a legal requirement and a valued social goal, and they pointed to men's labour migrations to high HIV-prevalence communities and women's participation in sex work as strategies to achieve that. Building from regional evidence showing young East African women participate in transactional, intergenerational sex to secure school fees for themselves, our findings point to the negative health spillover effects of Uganda's universal schooling policies for the whole family. [ABSTRACT FROM AUTHOR]

Bone sarcoma often occurs in childhood, as well as in adolescents and young adults (AYAs). AYAs differ from pediatric patients in that their bone is skeletally mature and the physis has almost disappeared with the completion of growth. Although AYAs spend less time outside, they often participate in sports activities, as well as driving, working, and raising a family, which are natural activities in daily living. Multidisciplinary approaches involving imaging, multi-agent chemotherapy, surgical procedures, and careful postoperative care has facilitated an increase in limb-sparing surgery for bone sarcoma. In addition, recent advances in imaging modalities and surgical techniques enables joint-preservation surgery, preserving the adjacent epiphysis, for selected patients following the careful assessment of the tumor margins and precise tumor excision. An advantage of this type of surgery is that it retains the native function of the adjacent joint, which differs from joint-prosthesis replacement, and provides excellent limb function. Various reconstruction procedures are available for joint-preserving surgery, including allograft, vascularized fibula graft, distraction osteogenesis, and tumor-devitalized autografts. However, procedure-related complications may occur, including non-union, infection, fracture, and implant failure, and surgeons should fully understand the advantages and disadvantages of these procedures. The longevity of the normal limb function for natural activities and the curative treatment without debilitation from late toxicities should be considered as a treatment goal for AYA patients. This review discusses the concept of joint-preservation surgery, types of reconstruction procedures associated with joint-preservation surgery, and current treatment outcomes. [ABSTRACT FROM AUTHOR]

Soft-tissue sarcoma is a rare cancer that accounts for approximately 1% of all malignant tumors. Although they occur in various age groups, soft-tissue sarcomas account for 8% of all malignant tumors developing in adolescents and young adults, suggesting that they are not rare in this age group. This study aimed to evaluate the clinical and pathological characteristics of soft-tissue sarcoma in adolescents and young adults. According to the Bone and Soft-Tissue Tumor Registry in Japan, myxoid liposarcoma is the most common type of soft-tissue sarcoma found in adolescents and young adults; alveolar soft part sarcoma, extraskeletal Ewing sarcoma, epithelioid sarcoma, clear cell sarcoma and synovial sarcoma occur predominantly in this age group among soft-tissue sarcomas. The analysis based on this registry demonstrated that age was not a prognostic factor for poor survival of soft-tissue sarcoma, although the prognosis in adolescents and young adults was better than that in older patients in the US and Scandinavia. Adolescent and young adult patients with soft-tissue sarcoma have age-specific problems, and a multidisciplinary approach to physical, psychological, and social issues is necessary to improve the management of these young patients both during and after treatment. [ABSTRACT FROM AUTHOR]

Background: The focus on cancer in adolescents and young adults (AYA) has increased in recent years. We participated in an event called AYA week 2021 as part of a research project of the Ministry of Health, Labour and Welfare (MHLW) and conducted a fact-finding survey to collect information for raising public awareness of AYA-generation cancers and to improve support for AYA-generation cancer patients. Methods: A 25-item questionnaire survey was conducted through requests sent to the deans of medical schools and presidents of related universities across Japan and by advertising on social networking sites and friendship networks. Furthermore, the effects of a lecture given by three cancer survivors on their cancer experience were examined. Results: A total of 1288 healthcare students participated. The most common age group was between 20 and 24 years, with the majority being medical students (83%). The AYA cancer-educated population had more knowledge about AYA-generation cancers than the overall group. At present, very few people are familiar with AYA-generation cancers (30.5%), which highlights the importance of school education. There were 163 participants who attended the lecture given by the cancer survivors, of whom 108 completed the questionnaire. The results showed high participant satisfaction related to the lecture given by cancer survivors, suggesting that such lectures could help educate and raise awareness about AYA-generation cancers. Conclusions: The knowledge survey and lecture given by cancer survivors had educational effects. Many healthcare students responded positively, suggesting the efficacy of these types of initiatives. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYA) with a chronic medical condition (CMC) attending college must learn to manage their own healthcare (i.e., transition readiness). Maturity has been linked to positive outcomes in AYAs. Research has established a positive relationship between transition readiness and quality of life. The current study aimed to examine a model of perceived maturityàtransition readinessàmental and physical quality of life. AYA (N = 153) with a CMC completed self-report questionnaires. The perceived maturity→transition readiness→mental quality of life indirect path was significant (ab = 1.96, 95% CI = 0.53 to 3.62). The perceived maturity→transition readiness→physical quality of life direct and indirect paths were not significant. Results showed that maturity and transition readiness are positively associated. Transition readiness may be one mechanism by which maturity results in enhanced quality of life. Findings highlight the value of enhancing strengths such as maturity to promote AYA independence/autonomy. [ABSTRACT FROM AUTHOR]

Background: As more than 85% of patients with congenital heart disease (CHD) have grown to adulthood through improvement in treatment and surgery, the difficulties they experience are expanding into areas related to daily life. Accordingly, adjustment to school in adolescents and young adults (AYAs) with CHD is of increasing interest and is influenced by familial factors. Objective: This was a cross-sectional descriptive study to examine the effects of parental positive emotional expressiveness and sibling relationships on school adjustment of AYAs with CHD. Methods: In this study, a self-reported questionnaire survey was used to collect the data. The participants were 104 AYAs with CHD aged 13 to 21 years who were attending school and had siblings. Results: Maternal positive emotional expressiveness (r = 0.584, P <.01), paternal positive emotional expressiveness (r = 0.584, P <.01), and sibling warmth/closeness (r = 0.478, P <.01) were significantly correlated with school adjustment. However, the results of multiple regression analysis showed that only maternal positive emotional expressiveness (ß = 0.459, P <.05) and sibling warmth/closeness (ß = 0.236, P <.05) were significantly associated with school adjustment. Conclusions: Adolescents and young adults with CHD who reported higher maternal positive emotional expressiveness and sibling warmth/closeness exhibited better school adjustment. Findings suggest that intervention programs to increase parental positive expressiveness and enhance warmth/closeness of sibling relationships may contribute to improving school adjustment. [ABSTRACT FROM AUTHOR]

To investigate the outcomes of children, adolescents, and young adults (AYAs) with malignant ovarian germ cell tumors (MOGCTs), we analyzed the data of 61 patients aged ≤39 years diagnosed with MOGCT between 2006 and 2022. Among 59 patients who received chemotherapy after initial diagnosis, 57 received BEP (standard dose of bleomycin with 30 units per week, n = 13) or bEP (reduced dose of bleomycin with 15 units/m2 on day 1, n = 44). The 5-year overall survival (OS) and event-free survival (EFS) rates were 98.3% and 84.9%, respectively. Reduced bleomycin dose did not adversely affect survival. Normalization of tumor markers within 3 months after surgery was significantly associated with better EFS (p < 0.01). Of the 59 surviving patients, 8 experienced surgery-related menopause, while 49 demonstrated menstrual recovery. After completion of chemotherapy, there was no significant difference in pulmonary function regarding bleomycin dose, and no overt nephrotoxicity. Approximately 60% and 25% of survivors experienced peripheral neuropathy at the end of chemotherapy and after 1 year, respectively (p < 0.01). Children and AYAs with MOGCT have favorable survival rates with minimal long-term toxicity, which are not influenced by a reduced bleomycin dose. Rapid normalization of tumor markers is associated with improved outcomes.

To address poor outcomes among adolescents and young adults living with HIV (AYA-HIV), iCARE Nigeria successfully piloted two-way text message antiretroviral therapy (ART) reminders together with peer navigation. Study participants had significant improvement in ART adherence and viral suppression at 48 weeks. Understanding facto of this intervention. We used explanatory, mixed methods to assess implementation outcomes (feasibility, acceptability, and adoption) and identify implementation strategies used or adapted to promote intervention success. Quantitative data included participant surveys, program records, and back-end mHealth data, and were summarized using descriptive statistics. Qualitative data were collected from key informants and focus group discussions with program staff and summarized using directed content analysis. iCARE Nigeria was feasible as evidenced by ease of recruitment, high retention of patients and peer navigators (PN), and successful deployment of initial text message reminders (99.9%). Most participants (95%) and PN (90%) found text message reminders were not bothersome or intrusive. Implementation strategies employed to facilitate intervention success included: (1) selecting, training, supervising, and matching of PN to patients; (2) tailoring frequency (daily to weekly) and mode of communication between PN and patients according to patient need; (3) routine screening for adherence challenges; (4) changing phone airtime stipends from monthly to weekly in response to rapid depletion; and (5) conducting telecommunication needs assessments, to identify and troubleshoot implementation barriers (issues with mobile devices, power availability). iCARE Nigeria was feasible and acceptable with high adoption by stakeholders. The implementation strategies identified here can be tailored for intervention scale-up in similar environments to promote ART adherence for AYA-HIV.

PurposeAdolescent and young adult (AYA) cancer survivors experience unique barriers that compromise receipt of survivorship care; therefore, development of innovative educational interventions to improve rates of AYA survivorship care is needed. The efficacy of text-messaging and peer navigation interventions was compared to standard-of-care survivorship educational materials to increase AYAs' (1) late effects knowledge and (2) knowledge, attitudes, and self-efficacy towards seeking survivor-focused care.MethodsThis was a three-armed, prospective, randomized controlled trial with one control group and two intervention groups. The control group received current standard-of-care educational materials. One intervention group participated in a text-messaging program, and the second participated in a peer navigator program. Participants completed pre- and post-intervention questionnaires. Study outcome variables were quantified using Fisher exact tests, two-sample t tests, exact McNemar tests, conditional logistic regression models, and analysis of covariance.ResultsSeventy-one survivors completed the study (control n = 24; text-messaging n = 23; peer navigation n = 24). Late effects knowledge was high at baseline for all groups. The text-messaging group had increased survivorship care knowledge compared to the control group (p

Perceived support and conflict between adolescents and young adults with cancer and their primary caregivers, other family, close friends, and medical staff were examined in relation to adolescents and young adults' psychological health. Adolescents and young adults ( n = 115, 51% male, ages 12-24 years, M (standard deviation)  = 16.07 (2.29)) in outpatient cancer treatment perceived more support and conflict within familial relationships than other relationships. Among familial relationships, perceived support and conflict were associated with psychological health; within other relationships, only support was associated with psychological health. Interactions among family were most strongly correlated with psychological distress; interactions with friends were stronger correlates of posttraumatic stress symptoms, positive affect, and posttraumatic growth.

Using an ecological perspective, we sought to elucidate the perceived barriers preventing HIV service access among two groups of U.S. youth (ages 12-24) disproportionately affected by HIV, men who have sex with men and high-risk women. We content analyzed interviews with 318 key informants to identify distinct service barriers. The 29 barriers informants named were organized into six categories (service-seeking demands, stigmas, knowledge and awareness, service quality, powerful opposition, and negative emotions). Findings suggest that barriers impacting access to HIV prevention, testing, and linkage-to-care services are remarkably similar and point to the need for comprehensive approaches to improving youth's access services that address both individual-level barriers and extra-individual barriers simultaneously. Findings can be used to guide future research, programming and interventions to reduce the disproportionate spread of HIV among US youth.

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.

Scholars of global health have embraced universal education as a structural intervention to prevent HIV. Yet the costs of school, including fees and other ancillary costs, create an economic burden for students and their families, indicating both the challenge of realising the potential of education for preventing HIV and the ways in which the desire for education may produce vulnerabilities to HIV for those struggling to afford it. To explore this paradox, this article draws from collaborative, team-based ethnographic research conducted from June to August 2019 in the Rakai district of Uganda. Respondents reported that education is the most significant cost burden faced by Ugandan families, sometimes amounting to as much as 66% of yearly household budgets per student. Respondents further understood paying for children’s schooling as both a legal requirement and a valued social goal, and they pointed to men’s labour migrations to high HIV-prevalence communities and women’s participation in sex work as strategies to achieve that. Building from regional evidence showing young East African women participate in transactional, intergenerational sex to secure school fees for themselves, our findings point to the negative health spillover effects of Uganda’s universal schooling policies for the whole family.

Opposing acute lymphoblastic leukemia, sparse data about AYAs with acute myeloid leukemia (AML) is available. Overall, 125 AYAs (age 10–35 years) treated during the last two decades were evaluated and compared to 385 older patients. CBF leukemia was more frequent in AYAs (21.6% vs. 8%, p < 0.001); however, many presented high-risk features. AYAs showed improved complete remission rate (CR, 80% vs. 65%, p = 0.01), lower cumulative incidence of relapse and TRM and longer survival (5 year-OS 53% vs. 24%, p < 0.0001), observed mainly in intermediate-risk karyotype. Adolescents displayed even better outcomes (5 year-OS 69%). AlloHCT in CR1 was beneficial for nonadolescent AYAs (5 year-OS 66.7% vs. 44.4% without HCT, p = 0.04). Among 50 APL patients, 19 AYAs experienced better outcomes than older, mainly attributed to reduced treatment-related mortality (TRM, 5% vs. 19%, p = 0.1). We observed an important (>10%) survival gain for AYAs during the last decade. However, AYAs have still unmet needs to obtain optimal cure rates. [ABSTRACT FROM AUTHOR]

The article presents the discussion on providing updated and consolidated guidance on best-possible care to children, adolescents, and young adults with type 1 diabetes (T1D) and type 2 diabetes (T2D). Topics include improving care by making the best possible use of available resources while constantly endeavoring to reach the next level; and Diabetes self-management education (DSME), initial and ongoing being important for PwD and caregivers.

Mental health problems among adolescents and young adults are increasing worldwide together with loneliness, which is considered a global public health problem. The aim of this study was to explore loneliness through adolescents' and young adults' own descriptions and experiences. The research questions were: (1) How do adolescents and young adults describe and experience loneliness?, (2) What types of loneliness do adolescents and young adults describe? Data were collected through interviews with fifteen Swedish-speaking Finns aged 17–30. Content analysis was used for data analysis. Loneliness was linked to earlier negative experiences, mental illness or physical disorders, self-centred society, social norms and social media. Three different types of loneliness were identified: social loneliness, emotional loneliness and existential loneliness. It is important that adults and professionals are able to identify, interpret and understand signs that adolescents and young adults are experiencing negative feelings, which may indicate underlying loneliness. [ABSTRACT FROM AUTHOR]

Introduction: Although evidence-based treatments for posttraumatic stress disorder (PTSD) in adolescents and young adults exist, affected youth do not have sufficient access to these treatments due to structural and attitudinal barriers. Internet- and mobile-based interventions (IMIs) can help fill this healthcare gap, but such programmes have not yet been sufficiently evaluated in youth with PTSD. Aim: This study aims to investigate the feasibility of an IMI for youth with PTSD in a one-arm, non-randomised, prospective proof-of-concept feasibility study. Methods: We aim to recruit 32 youth between 15 and 21 years old with clinically relevant posttraumatic stress symptoms (CATS ≥ 21), who will receive access to the IMI. The IMI consists of nine sessions involving psychoeducation, emotion regulation and coping skills, written-based imaginal exposure, cognitive restructuring and relapse prevention. Participants will be guided by an eCoach, who provides weekly semi-standardised written feedback on completed sessions and adherence reminders. We will use a formal feasibility framework to assess different dimensions of feasibility: (1) recruitment capability and resulting sample characteristics, (2) data collection procedures and outcome measures, (3) acceptability of the IMI and study procedures, (4) resources and ability to manage and implement the study and IMI and (5) participants' responses to the IMI in terms of symptom severity and satisfaction. Additionally, potential negative effects related to the intervention will be assessed. Assessments take place pre-, mid- and post-intervention and at follow-up, including semi-structured clinical telephone interviews for PTSD diagnostics at pre- and post-intervention assessment. Qualitative interviews will be conducted to investigate the youth perspectives on the IMI. Discussion: This study aims to determine the feasibility of a guided IMI for youth with PTSD to adapt the IMI as closely as possible to youth needs and to inform the design, procedure and safety management of a large-scale efficacy RCT. Trial registration: German Clinical Trials Register identifier: DRKS00023341. Evidence-based care for adolescents after trauma is not widely available.• This study evaluates the feasibility of a guided trauma-focused Internet intervention as a time- and location-independent low-threshold treatment option for adolescents and young adults with posttraumatic stress disorder. [ABSTRACT FROM AUTHOR]

Background: Social media offer a promising channel to deliver e-cigarette cessation interventions to adolescents and young adults (AYAs); however, interventions delivered on social media face challenges of low participant retention and decreased engagement over time. Peer mentoring has the potential to ameliorate these challenges. Objective: The aim of this study was to understand, from both the mentee and potential mentor perspective, the needs, expectations, and concerns of AYAs regarding peer mentoring to inform the development of social media–based peer mentoring interventions for e-cigarette cessation among AYAs. Methods: Seven focus groups, including four mentee groups and three potential mentor groups, were conducted with 26 AYAs who had prior experience with e-cigarette use and attempts to quit in the context of a social media–based e-cigarette cessation intervention. Discussion focused on preferred characteristics of peer mentors, expectations about peer mentoring, mentoring mode, mentor training, incentives for peer mentors, preferred social media platforms for intervention delivery, supervision, and concerns. Focus group transcripts were coded and analyzed using a thematic analysis approach. Results: Overall, participants were receptive to peer mentoring in social media–based cessation interventions and believed they could be helpful in assisting e-cigarette cessation. Participants identified the most important characteristics of peer mentors to be of similar age and to be abstinent from e-cigarette use. Participants expected peer mentors would share personal experiences, provide emotional support, and send check-ins and reminders. Peer mentors supporting a group of mentees in combination with one-on-one mentoring as needed was the preferred mentoring mode. A group of 10 mentees with a mentor:mentee ratio of 1:3-5 was deemed acceptable for most participants. Participants expressed that mentor training should include emotional intelligence, communication skills, and the scientific evidence about e-cigarettes. Although monetary incentives were not the main motivating factor for being a peer mentor, they were viewed as a good way to compensate mentors’ time. Instagram was considered an appropriate social media platform to deliver a peer-mentored intervention due to its functionality. Participants did not express many privacy concerns about social media–based peer mentoring, but mentioned that boundaries and community agreements should be set to keep relationships professional. Conclusions: This study reflects the needs and preferences of young people for a peer mentoring intervention to complement a social media program to support e-cigarette cessation. The next step will be to establish the feasibility, acceptability, and preliminary efficacy of such a peer mentoring program. [ABSTRACT FROM AUTHOR]

Few studies have reported the outcomes of adolescents and young adults (AYAs) with chronic-phase chronic myeloid leukaemia (CML-CP) on tyrosine kinase inhibitors (TKIs). We retrospectively analysed the clinical features, treatment response, and long-term outcomes of 42 AYA patients, in comparison to older patients. The initial therapies of AYA patients between 2001 and 2016 included imatinib (n = 24), dasatinib (n = 13) and nilotinib (n = 5). In AYA patients, the peripheral blood (PB) white blood cell count and percentage of blasts at the diagnosis were significantly higher, haemoglobin levels were lower and the spleen size was larger. The major molecular response (MMR), event-free survival (EFS) and overall survival (OS) rates were comparable. A sub-analysis comparing imatinib to second-generation TKIs as the initial therapy also showed that their prognosis was comparable. In conclusion, the tumour burden at the diagnosis of CML-CP is higher in AYA patients; however, their prognosis was not worse in comparison to older patients treated with TKIs. Few studies have reported the outcomes of adolescents and young adults (AYAs) with chronic-phase chronic myeloid leukaemia (CML-CP) on tyrosine kinase inhibitors (TKIs). This study showed the tumour burden at the diagnosis of CML-CP is higher in AYA pa tients; however, their prognosis was not worse in comparison to older patients treated with TKIs. Understanding the biological and non-biological features of AYA patients with CML-CP on TKI therapy is essential for better management and to improve the outcomes. [ABSTRACT FROM AUTHOR]

Sickle cell disease (SCD) results in severe complications, such as anaemia and pain episodes. Hydroxyurea (HU) is efficacious in SCD, yet adherence remains low. To assess the relationship of HU adherence to health care utilization and patients' characteristics. This is a 5-year retrospective chart review. Patients' demographics and medical history were collected from the electronic medical record (EMR). HU adherence was evaluated using foetal haemoglobin "HbF%", mean corpuscular volume "MCV", and absolute neutrophil count "ANC". Age groups included children (<12 years), adolescents (12–17 years), and young adults (≥18 years). A total of 113 SCD patients on HU were included (median age 14 years, IQR 10–20; 50% female; 88% HbSS). Young adults had significantly higher HU adherence compared to adolescents and children, including higher median HbF% (24.2 vs. 12.4 vs. 8.6, p =.003), MCV (fl) (106.4 vs. 96.2 vs. 95.4, p =.01) and lower ANC (103/ml) (3.25 vs. 4.9 vs. 4.2, p =.01), respectively. Patients with chronic pain had lower HU adherence (HbF% 15.3 vs. 10.7, p =.04; ANC 3.6 vs. 6.3, p =.002; MCV 102.3 vs. 93.1, p =.1). Patients with higher HbF or MCV and lower ANC had significantly less frequent emergency room visits (rs=–0.26, p =.01; rs=–0.23, p =.01; rs=0.24, p =.01) and hospitalizations (rs=–0.27, p =.01; rs=–0.31, p =.01; rs=0.21, p =.02) as well as shorter length of stays (rs=–0.27, p =.0045; rs=–.34, p = 0.004; rs=0.23, p =.02), respectively. Similar trends in HU adherence and health care utilization were seen in subgroup analysis of only HbSS patients. There was no significant association of HU adherence to patients' sex, socio-economic status, distance from hospital, and HU duration. Young adults with SCD had significantly higher HU adherence compared to children and adolescents. Patients with lower HU adherence and/or chronic pain had increased health care utilization. Future studies examining barriers to adherence and evaluating interventions to optimize HU adherence in SCD are warranted. Young adults with SCD had significantly higher HU adherence, as reflected in their laboratory markers, compared to children and adolescents. Patients with higher HU adherence and/or those without chronic pain had lower or less frequent health care utilization. No significant association of HU adherence to patients' sex, socio-economic status and distance from hospital. [ABSTRACT FROM AUTHOR]

Pediatric oncology patients are at risk for poor outcomes with respiratory viral infections. Outcome data for COVID‐19 in children and young adults with cancer are needed; data are sparse for obese/overweight and adolescent and young adult subgroups. We conducted a single center cohort study of COVID‐19 outcomes in patients younger than 25 years with cancer. Candidate hospitalization risk factors were analyzed via univariable and multivariable analyses. Eighty‐seven patients with cancer and COVID‐19 were identified. Most were Hispanic/Latinx (n = 63, 72%). Forty‐two (48%) were overweight/obese. Anticancer therapy included chemotherapy only (n = 64, 74%), chimeric antigen receptor T‐cells (CAR‐T, n = 7), hematopoietic stem cell transplantation (HSCT, n = 12), or CAR‐T and HSCT (n = 4). There was no COVID‐19 related mortality. Twenty‐six patients (30%) required COVID‐19 related hospitalization; 4 required multiple hospitalizations. Nine (10%) had severe/critical infection; 6 needed intensive care. COVID‐19 resulted in anticancer therapy delays in 22 (34%) of 64 patients on active therapy (median delay = 14 days). Factors associated with hospitalization included steroids within 2 weeks prior to infection, lymphopenia, previous significant non‐COVID infection, and low COVID‐19 PCR cycle threshold value. CAR‐T recipients with B‐cell aplasia tended to have severe/critical infection (3 of 7 patients). A COVID‐19 antibody response was detected in 14 of 32 patients (44%). A substantial proportion of COVID‐19 infected children and young adults with cancer require inpatient management; morbidity may be high in B‐cell immunodeficiency. However, a majority of patients can be taken through chemotherapy without prolonged therapy delays. Viral load is a potential outcome predictor in COVID‐19 in pediatric cancer. [ABSTRACT FROM AUTHOR]

Background: Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom. Methods: From six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes. Results: All projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training. Conclusion: With this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research. Plain English summary: In more and more projects, researchers and young people are working together in partnership; but there is little guidance about how to organize this partnership. In this paper, we share what partnerships in six projects from Canada, Netherlands, and United Kingdom looked like, so that others can be inspired. To do so, a researcher and a young partner from each project were asked to together: (1) describe their project, (2) summarize the practical details about the collaboration and (3) think about things that went well or could be improved. We found that all projects had the same beliefs important to partnerships, like having respect for each other. Young people could work on parts of the project they liked in a way that worked for them. They were supported by staff, could join meetings and were appreciated for their work. Clear communication during and in-between meetings was helpful. Youth were often asked about the role they wanted in the project. While there was often no formal training on how to do research, there were many opportunities to learn. We offer six recommendations to researchers and young people who want to partner together: (1) It is okay to not know what the partnership will look like and there is no single recipe of how to partner; (2) Take your time; (3) Discuss how the partnership is going; (4) Think about who is doing what and why; (5) Consider the diversity of young partners. We hope others will share their experiences. [ABSTRACT FROM AUTHOR]

Introduction: Increasingly more adolescent and young adult (AYA, aged 18-39 years) patients with an uncertain and/or poor cancer prognosis (UPCP) are gaining life-years because of novel treatments or refinement of established therapies, and sometimes even face the prospect of long-term disease control. This study aims to examine the challenges of AYAs with a UPCP in daily life to inform the development of AYA care programs. Methods: Semi-structured in-depth interviews were conducted among AYAs with a UPCP. Since we expected differences in experiences between three AYA subgroups, we interviewed patients of these subgroups (1): traditional survivors (2), low-grade glioma survivors, and (3) new survivors. Interviews were analyzed using elements of grounded theory. AYA patients were actively involved as research partners. Results: In total 46 AYAs with UPCP participated and shared their challenges in daily life. They were on average 33.4 years old (age range 23-44) and most of them were women (63%). The most common tumor types were low-grade gliomas (16), sarcomas (7), breast cancers (6), and lung cancers (6). We identified five primary themes: (1) feeling inferior to previous self and others (e.g. feeling useless, who wants me in a relationship), (2) feeling of being alone (e.g. lonely thoughts, nobody really gets me), (3) ongoing confrontation (e.g. it is always there, own decline), (4) grief about life (e.g. grief about life I did not get, grief about old life), and (5) loss of control over the future (e.g. not able to make future plans, waiting for growth). Although all of the challenges were identified in the three AYA subgroups, the perceived intensity of the challenges differed slightly between the subgroups. Discussion: AYAs living with a UPCP experience challenges associated to their sense of altered identity, their position in the social network, and the future uncertainties. This study highlights the importance to recognize and acknowledge the unique challenges of this group. To provide age-specific care, it is important to embed acceptance and commitment therapy and AYA peer support within the healthcare system and other care programs to support AYAs to live well with their disease. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescent and young adult (AYA) cancer survivors diagnosed with cancer between ages 18–39 years often experience negative body changes, such as scars, amputation, hair loss, disfigurement, body weight changes, skin buns, and physical movement limitations. A negative body image could have negative implications for the self-esteem, self-identity, and social relationships of AYAs. Despite the possible long-term effects of cancer on body image, within the AYA literature, limited studies focus on AYA cancer survivors in a quantitative way. Therefore, the aim of our population-based cross-sectional study was to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA survivors 5–20 years after diagnosis. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future longitudinal research could help to identify when and how this support for AYA survivors can be best utilized. Adolescent and young adult (AYA) cancer survivors (18–39 years at diagnosis) often experience negative body changes such as scars, amputation, and disfigurement. Understanding which factors influence body image among AYA survivors can improve age-specific care in the future. Therefore, we aim to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA cancer survivors (5–20 years after diagnosis). A population-based cross-sectional cohort study was conducted among AYA survivors (5–20 years after diagnosis) registered within the Netherlands Cancer Registry (NCR) (SURVAYA-study). Body image was examined via the EORTC QLQ-C30 and QLQ-SURV100. Multivariable logistic regression models were used. Among 3735 AYA survivors who responded, 14.5% (range: 2.6–44.2%), experienced a negative body image. Specifically, AYAs who are female, have a higher Body Mass Index (BMI) or tumor stage, diagnosed with breast cancer, cancer of the female genitalia, or germ cell tumors, treated with chemotherapy, using more maladaptive coping strategies, feeling sexually unattractive, and having lower scores of health-related Quality of Life (HRQoL), were more likely to experience a negative body image. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future research could help to identify when and how this support for AYA survivors can be best utilized. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Adolescence is a phase of higher vulnerability for suicidal behavior. In Germany, almost 500 adolescents and young adults aged 15-25 years commit suicide each year. Youths in rural areas are characterized by a higher likelihood of poorer mental health. In rural areas, appropriate support for adolescents and young adults in mental health crises is difficult to access. The general acceptability of digital communication in youths can make the provision of an eHealth tool a promising strategy. Objective: The aim of this study was to explore the health needs regarding suicide prevention for adolescents and young adults in rural areas of Germany and Switzerland and to identify characteristics of suitable e-mental health interventions. Methods: This study reports on a qualitative secondary analysis of archived data, which had been collected through formative participatory research. Using 32 semistructured interviews (individually or in groups of 2) with 13 adolescents and young adults (aged 18-25 years) and 23 experts from relevant fields, we applied a deductive-inductive methodological approach and used qualitative content analyses according to Kuckartz (2016). Results: Experts as well as adolescents and young adults have reported health needs in digital suicide prevention. The health needs for rural adolescents and young adults in crises were characterized by several categories. First, the need for suicide prevention in general was highlighted. Additionally, the need for a peer concept and web-based suicide prevention were stressed. The factors influencing the acceptability of a peer-driven, web-based support were related to low-threshold access, lifelike intervention, anonymity, and trustworthiness. Conclusions: The results suggest a need for suicide prevention services for adolescents and young adults in this rural setting. Peer-driven and web-based suicide prevention services may add an important element of support during crises. By establishing such a service, an improvement in mental health support and well-being could be enabled. These services should be developed with the participation of the target group, taking anonymity, trustworthiness, and low-threshold access into account. [ABSTRACT FROM AUTHOR]

Rates of sexually transmitted infections (STIs) in the United States have increased for the sixth consecutive year. Young people ages 15-24 account for over half of all new infections despite comprising only a quarter of the sexually active population. A potential explanation for this is the increased use of long-acting reversible contraceptives, (LARCs) which could result in lower condom use and/or increased sexual risk-taking due to higher pregnancy prevention efficacy. This paper uses the National Survey of Family Growth to examine the relationship between primary contraceptive method use among young women ages 15-24 and STI treatment in the past year, as well as the extent to which this association is mediated by relationship status and frequency of condom use. Findings did not show differences in STI treatment in the past year by primary contraceptive method, indicating that LARC use among young women does not equate to increased STI risk. Findings did show that young women who had been in casual-only relationships or a mix of relationship types in the past year were more likely to have been treated for an STI than young women in serious or dating-only relationships, regardless of the primary method used. Additionally, young women who used condoms "some" of the time were more likely to have been treated for an STI compared with women who used condoms "all" or "most" of the time. This association was mediated by relationship status (P =.05). Findings suggest that efforts to address the growing STI burden should be directed at providing comprehensive, gender-equitable sexual health education that enables young people to engage in healthy relationships and consistent condom use. [ABSTRACT FROM AUTHOR]

As a spreading addictive behaviour in recent years, internet gaming disorder (IGD) has been studied a lot and the overall research results indicate that IGD has a high prevalence among adolescents and young adults (AYAs). To update the status quo of prevalence, it is necessary to conduct comprehensive analyses. On the premise of following the PRISMA statement, the study conducted two systematic reviews and meta-analyses to assess the global prevalence of IGD among AYAs and identify its possible risk factors. To achieve the goals, PubMed and CNKI databases were used to select the concerned studies published up to May 31, 2021. Heterogeneity was assessed using a funnel plot, Begg's test, Egger's test, and trim-and-fil method, followed by sensitivity analysis, subgroup analysis, and meta-regression analysis. For the meta-analysis of prevalence, 407,620 participants from 155 reports in 33 countries were included. The pooled prevalence of IGD among AYAs was 9.9% (95% CI: 8.6%–11.3%, P = 0.000, I 2 = 94.4%), including 8.8% (95% CI: 7.5%–10.0%) among adolescents and 10.4% (95% CI: 8.8%–11.9%) among young adults. The following 12 factors are the possible risk factors of IGD among AYAs, which are stress, long average game time, family dysfunction, poor academic performance, being bullied, bullying, interpersonal problems, hyperactivity/inattention, anxiety, depression, emotional distress and low self-esteem. This study confirms the prevalence and possible risk factors for IGD among AYAs. It's valuable in understanding the threat of IGD and finding intervention strategies for IGD among AYAs. • Provides updated global prevalence of internet gaming disorder among adolescents and young adults in summary (9.9%) and separately (8.8% vs 10.4%). • Higher prevalence of internet gaming disorder among adolescents and young adults in males (15.4%) compared to females (6.4%). • Identify 12 possible risk factors for internet gaming disorder among adolescents and young adults. [ABSTRACT FROM AUTHOR]

Background: Cancer development in adolescents and young adults (AYAs) has elicited recent interest. We investigated the surgical and functional outcomes of robot-assisted laparoscopic partial nephrectomy (RAPN) for renal cell carcinoma (RCC) in AYAs. Methods: We retrospectively reviewed the medical records of 1023 patients with clinical stage I RCC who underwent RAPN before January 2021. Patients were divided into two groups: AYAs (aged 18–39 years) and non-AYAs (aged 40–89 years). The trifecta criteria, defined as a negative surgical margin, no perioperative complications (Clavien–Dindo grade > 2), and preserved postoperative renal function (1-year postoperative estimated glomerular filtration rate > 90% of baseline), were used to compare outcomes. We performed 1:1 propensity-score matching on the patient cohort. Results: There were initially 125 and 898 patients in the AYAs and non-AYAs groups, respectively, and 108 patients were included in each group after propensity score matching. There were no significant differences in surgical factors (operation time, clamping ischemia time, estimated blood loss, length of hospital stay, surgical complication rate) or renal function in the early postoperative period. The mean postoperative renal function was better (p = 0.0200) and the decrease in estimated glomerular filtration rate was lower (p = 0.0026) in AYAs than in non-AYAs 12 months postoperatively. The trifecta achievement rates in the AYAs and non-AYAs groups were significantly different (67.6% and 53.7%, respectively, p = 0.0220). Conclusion: Although there was no difference in surgical burden between the groups, the estimated glomerular filtration rate was better preserved in AYAs than in non-AYAs at 6 and 12 months post-RAPN. [ABSTRACT FROM AUTHOR]

Introduction HD-MTX is a key drug in the treatment protocols for ALL. The regimen needs to be administered with appropriate supportive measures and serum methotrexate level monitoring. A limited testing strategy is relevant in resource constraint settings since it allows a shorter duration of hospitalization. We report our experience with this strategy and its impact on the patient safety outcomes. Methods This is a retrospective study of all patients ≥ 15 years of age with newly diagnosed ALL or Lymphoblastic lymphoma (LBL) who were administered HDMTX (part of BFM-90 ALL protocol) at our institute between March 2013 to November 2013.The medical records were reviewed for clinical characteristics, disease-related details, HDMTX dose and cycles administered, leucovorin rescue and toxicities. Results A total of 423 cycles of HD-MTX were administered to 106 patients during the study period. The median duration for completion of all 4 cycles of HDMTX was 53 (IQR 49–60) days. The grade 3 or higher toxicities were anemia in 9.6%, neutropenia 19.4%, febrile neutropenia 5.7%, thrombocytopenia 4.4% and mucositis in 0.7%. There was statistically significant correlation between the levels at 42 h (≤ 1 mmol/L vs > 1 mmol/L) and toxicity- anemia, FN and mucositis observed more in the late clearance group. With limited sampling strategy whereby if the 42- hour level MTX level are < 1 mmol/L, 57% of patients could be discharged early. Conclusion HD-MTX can be safely administered to adolescent and adult ALL patients. A limited methotrexate level monitoring is a safe strategy that can optimize the resources better. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15–39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.

This study aims to identify the needs and wishes of childhood cancer long-term survivors for digitally mediated emotional peer support. Survivors of childhood cancer (six men, seven women) aged 19–33, participated in semi-structured interviews (November–December 2020). Age of diagnosis ranged from 1 to 13 years. The interviews lasted between 45 and 85 min. A thematic analysis was used to identify three themes for needs: processing long-term complications of cancer treatment, processing psychosocial health and meeting others who share similar experiences; and another three themes reflecting wishes: digital tools for connecting with people who had had similar experiences, different modes of communication and a safe place with varying degrees of anonymity. The findings emphasized the needs and wishes of childhood cancer survivors to meet others who had had similar experiences using a digital tool that offered a secure place, with options for a variety of communication methods and levels of anonymity. Peer support can serve as an important complement to professional psychosocial support.

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

Adolescents and young adults (AYAs) with Ewing sarcoma have a worse prognosis than children. Population-based survival evaluations stratifying findings by important clinical factors are, however, limited. This Dutch population study comprehensively compared survival of children and AYAs with Ewing sarcoma over three decades considering diagnostic period, tissue of origin, tumor site, and disease stage. Data on all children (0–17 years, N = 463) and AYAs (18–39 years, N = 379) diagnosed with Ewing sarcoma in the Netherlands between 1990–2018 were collected from the Netherlands Cancer Registry with follow-up until February 2023. Five-year relative survival was calculated using the cohort method. Multivariable analyses were conducted through Poisson regression. Children with Ewing sarcoma had a significantly higher 5-year relative survival than AYAs (65 % vs. 44 %). An increasing trend in survival was noted reaching 70 % in children and 53 % in AYAs in 2010–2018. Results were similar for Ewing bone sarcoma and extraosseous Ewing sarcoma. AYAs had a poorer prognosis than children for most tumor sites and regardless of disease stage. Survival probabilities were 60 % vs. 78 % for localized disease and 20 % vs. 33 % for metastatic disease. Multivariable-regression analysis, adjusted for follow-up time, diagnostic period, sex, disease stage, and tumor site, confirmed increased excess mortality among AYAs compared with children (excess HR: 1.7, 95 % CI: 1.3–2.1). Despite survival improvements since the 1990s, AYAs with Ewing sarcoma in the Netherlands continue to fare considerably worse than children. This survival disparity was present irrespective of tissue of origin, tumor site, and disease stage • Children with Ewing sarcoma in the Netherlands had better overall survival than AYAs. • Five-year survival increased over time to 70 % in children and 53 % in AYAs in 2010-2018. • The survival difference between children and AYAs did not change over time. • Survival was similar for Ewing bone sarcoma and primary extraosseous Ewing sarcoma. • AYAs had a worse prognosis than children irrespective of tumor site and disease stage. [ABSTRACT FROM AUTHOR]

To investigate the safety of total body irradiation-based myeloablative conditioning (TBI-MAC) in adolescent and young adult (AYA) Philadelphia chromosome (Ph)-negative acute lymphoblastic leukemia (ALL) patients treated with pediatric protocols, treatment outcomes of 106 AYA patients aged 16–39 years old undergoing allogeneic stem cell transplant (allo-SCT) with TBI-MAC in the first remission were compared according to chemotherapy types before transplant. Pediatric and adult protocols were used in 56 and 50 of the patients, respectively. The cumulative incidence (CI) of non-relapse mortality (NRM) and the overall survival (OS) rates were not significantly different between the pediatric-protocol and adult-protocol group (NRM: 4 % vs. 14 % at five years post-transplant, respectively, p = 0.26; OS: 81 % vs. 66 %, respectively, p = 0.14). Multivariate analysis for NRM revealed that a performance status >0 (hazard ratio [HR] = 4.8) and transplant due to chemotherapy toxicities (HR = 3.5) were independent risk factors, but a pediatric protocol was not (HR = 0.48). The CI of NRM and the OS rates were also similar among patients aged over 24 years old. These findings suggested that conventional allo-SCT with TBI-MAC can be performed without increasing NRM in AYA patients with Ph-negative ALL even after pediatric protocols. • Appropriate conditioning regimen for ALL patients treated with pediatric protocols. • TBI-based MAC did not associated with increasing NRM after pediatric protocols. • Higher NRM risk among transplant recipients due to chemotherapy toxicity. [ABSTRACT FROM AUTHOR]

During the COVID-19 pandemic and in the years after, adolescents’ and young adults’ (AYAs) usage of social media increased. Social media has been shown to influence both the physical and mental behaviour of AYAs. The Emirates’ AYAs are among the world’s heaviest consumers of social media. This study aims to explore the usage of social media networks by AYAs for sharing and looking up health information, as well as interacting with local health systems, with a special focus on doctors and social media. This cross-sectional, descriptive study was used to collect comprehensive data from Arabic- and English-speaking Emirati students in grades 7 through 12 and university students between the months of December 2022 and April 2023. A total of 876 out of 930 responses were included. Of the responses, 27.71% were university students, with another 46.46% in grades 11 and 12. Three-fourths had a hospital or clinic visit in the last 6 months and 79.11% had good health perception. Smartphones were the most commonly used devices, at 92.12%. A total of 74.7% reported being able to obtain useful health information, with 40% having had a health decision influenced by it. Posting information on social media was not common, with only 32% posting such content (most commonly mood-related). Health information on social media by health authorities was considered the most trustworthy, with celebrities being the least trustworthy. More than half of AYAs searched for a physician before a visit, and the majority would not mind having a rash picture being posted on a public website if consent (verbal or written) was taken. Social media can influence the various health decisions an AYA might take and which doctors they might choose to see. Physicians should consider their presence and the content they present on social media carefully.