Trends in Cancer Incidence and Mortality in US Adolescents and Young Adults, 2016-2021.

(1) Background: The incidence rate of early onset-cancer (<50) has increased since 1995. Among younger people, cancers in AYAs (aged 15-39 y) are often biologically distinct tumors from those treated in the pediatric and older adult population. The current study describes trends in the United States for the most recent years including the first year of the COVID-19 epidemic. We aimed to describe the recent incidence and mortality trends of cancers in AYAs (aged 15-39 y). (2) Methods: We used data from the Surveillance, Epidemiology, and End Results (SEER 22) from 1 January 2016 to 31 December 2021. Age-adjusted incidence and mortality rates were assessed by SEER*Stat 8.4.3 for major cancer types by sex, race/ethnicity, age, and metropolitan/nonmetropolitan status. Time trends of age-adjusted incidence and mortality rates were examined by sex and metropolitan/nonmetropolitan status. (3) Results: Age-adjusted overall cancer incidence and mortality rates were stable during this study period. The age-adjusted incidence rates declined significantly for ependymoma, melanoma, carcinomas of lung, bronchus, and trachea, unspecified malignant neoplasms, and non-Hodgkin's lymphoma. Significant increases were found for gastrointestinal tract cancers and non-Kaposi sarcomas. The age-adjusted mortality rate decreased for acute myeloid leukemia, melanoma, carcinomas of liver and intrahepatic bile ducts, kidney and, in women, leukemia. For some cancers, rates differed by sex, race, ethnicity, and geography. Monitoring the rates and time trends of AYA cancer emphasizes the distinct health concern for this age group.

Sperm Quality in 1252 Adolescents and Young Adults (AYAs) Undergoing Fertility Preservation Due to Cancer or Nonmalignant Diseases.

Purpose: To investigate the quality of emergency-collected semen samples aimed at sperm cryopreservation provided by adolescents and young adults (AYAs) presenting with cancer or nonmalignant diseases. Methods: This is a prospective cohort study of postpubertal males referred for sperm cryopreservation who provided at least one semen sample for fertility preservation at the Reproductive Medicine Clinic of Karolinska University Hospital, Stockholm, Sweden, between January 2009 and January 2020. Sperm quality was assessed by total sperm count, concentration, and motility. Sperm quality by disease groups was compared with the reference population data of fertile men defined by the World Health Organization (WHO). Results: Among the 1252 patients who provided samples for cryopreservation, 1063 had cancer and 189 had nonmalignant diseases. The most common malignant indications included testicular cancers (n = 501) and Hodgkin lymphoma (n = 102). Among those with nonmalignant disease, 35% (n = 66) had testicular disease. Sperm quality was significantly lower in all groups of patients with cancer compared with the reference population. In total, azoospermia was found in 8% of the patients with cancer, in 9% of those with nonmalignant testicular disease, and in 3% of the remaining men with nonmalignant disease. Conclusion: Sperm quality in adult patients with cancer was significantly impaired compared with the WHO reference population standards for fertile men. For adolescent patients, standard reference values are lacking. AYAs wishing to preserve fertility should receive individualized counseling regarding sperm quality at the time of cryopreservation, and in selected cases, banking of additional samples should be recommended depending on the sperm quality parameters.

Long-term oncological outcomes of follicular thyroid cancer in adolescents and young adults: A nationwide population-based study.

BACKGROUND: Follicular thyroid carcinoma (FTC) in adolescents and young adults (AYAs) is rare and data on long-term oncological outcomes are scarce. This study aimed to describe the long-term recurrence and survival rates of AYAs with FTC, and identify risk factors for recurrence. METHODS: This is a retrospective cohort study combining two national databases, including all patients aged 15-39 years, diagnosed with FTC in The Netherlands between 2000 and 2016. Age, sex, tumor size, focality, positive margins, angioinvasion, pT-stage, and pN-stage were included in a Cox proportional hazard model to identify risk factors for recurrence. RESULTS: We included 192 patients. Median age was 31.0 years (IQR 24.7-36.3) and the male to female ratio was 1:4.1. Most patients presented with a minimally invasive FTC (MI-FTC) (95%). Five patients presented with synchronous metastases (2.6%), including two with locoregional metastases (1%) and three with distant metastases (1.6%). During a median follow-up of 12.0 years, three patients developed a recurrence (1.6%), of which one patient developed a local recurrence (33%), and two patients a distant recurrence (67%). Five patients died during follow-up (2.6%). Cause of death was not captured. A Cox proportional hazard model could not be performed due to the low number of recurrences. CONCLUSIONS: FTC in AYAs is generally characterized as a low-risk tumor, as it exhibits a very low recurrence rate, a high overall survival, and it typically presents as MI-FTC without synchronous metastases. These findings underscore the favorable long-term oncological prognosis of FTC in AYAs.

The COVID-19 pandemic, food insecurity, and psychosocial well-being in young South Africans newly diagnosed with HIV: a mediation analysis.

BACKGROUND: Poor psychological well-being, including depression, anxiety, and low self-esteem, is both prevalent among young South Africans living with HIV and associated with poor HIV clinical outcomes. By impacting food insecurity and employment, the COVID-19 pandemic may have influenced psychological well-being in this population. This analysis sought to examine whether food insecurity and unemployment mediated the relationship between study cohort (pre- versus during-pandemic) and psychological well-being in our sample of young South Africans living with HIV. METHODS: This was a secondary analysis comparing baseline data from two cohorts of young South Africans ages 18-24 from the Cape Town and East London metro areas who tested positive for HIV at clinics (or mobile clinics) either before or during the COVID-19 pandemic. Baseline sociodemographic, economic, and psychological outcomes were analyzed through a series of bivariate logistic regression and mediation analyses. All data were analyzed in 2023 and 2024. RESULTS: Reported food anxiety, insufficient food quality, and insufficient food quantity were lower in the cohort recruited during the COVID-19 pandemic than those recruited before the pandemic (p<0.001). Higher levels of food insecurity predicted higher depressive and anxiety symptoms and lower self-esteem. Food anxiety, insufficient food quality, and insufficient food quality, but not unemployment, mediated the relationship between study cohort and depressive symptoms, anxiety symptoms, and self-esteem. CONCLUSION: Food insecurity may have decreased amongst our sample of young people during the COVID-19 pandemic. Our findings build on our understanding of how the psychological well-being of young people living with HIV was affected by the COVID-19 pandemic and may lend support to interventions targeting food insecurity to improve psychological well-being in this population.

The survival disparity between children and adolescents and young adults (AYAs) with Ewing sarcoma in the Netherlands did not change since the 1990s despite improved survival: A population-based study.

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

BACKGROUND: With 5-year survival rates > 85%, gaining insight into the long-term and late health-related conditions of cancer survivors diagnosed in adolescence and young adulthood is of utmost importance to improve their quantity and quality of survival. This study examined the prevalence of and factors associated with, patient-reported health-related conditions and their latency times among long-term adolescent and young adult (AYA) cancer survivors. METHODS: AYA cancer survivors (5-20 years after diagnosis) were identified by the population-based Netherlands Cancer Registry (NCR), and invited to participate in the SURVAYA questionnaire study. Participants reported the prevalence and date of diagnosis of health-related conditions. Clinical data were retrieved from the NCR. RESULTS: Three thousand seven hundred seventy-six AYA cancer survivors (response rate 33.4%) were included for analyses. More than half of the AYAs (58.5%) experienced health-related conditions after their cancer diagnosis, of whom 51.4% were diagnosed with two or more conditions. Participants reported conditions related to vision (15.0%), digestive system (15.0%), endocrine system (14.1%), cardiovascular system (11.7%), respiratory system (11.3%), urinary tract system (10.9%), depression (8.6%), hearing (7.4%), arthrosis (6.9%), secondary malignancy (6.4%), speech-, taste and smell (4.5%), and rheumatoid arthritis (2.1%). Time since diagnosis, tumor type, age at diagnosis, and educational level were most frequently associated with a health-related condition. CONCLUSIONS: A significant proportion of long-term AYA cancer survivors report having one or more health-related conditions. IMPLICATIONS FOR CANCER SURVIVORS: Future research should focus on better understanding the underlying mechanisms of, and risk factors for, these health-related conditions to support the development and implementation of risk-stratified survivorship care for AYA cancer survivors to further improve their outcomes. CLINICAL TRIALS REGISTRATION: NCT05379387.

Psychosocial and supportive care concerns of young women living with advanced breast cancer: baseline findings from a prospective virtual support intervention study.

PURPOSE: Adolescent and young adults (AYAs) with metastatic breast cancer (MBC) experience high physical and psychosocial burdens compounded by a disrupted life trajectory. We sought to determine the psychosocial and supportive care concerns of this population to better understand and address unmet needs. METHODS: AYAs diagnosed with MBC (18-39 years) participating in a prospective interventional study (Young, Empowered, and Strong) at Dana-Farber Cancer Institute completed an electronic survey following enrollment. Measures evaluated sociodemographics, health behaviors, quality of life, and symptoms, among others. We used two-sided Fisher's exact tests to determine associations between concerns (e.g., cancer progression, side effects, lifestyle, finances, fertility) and demographic variables. RESULTS: Among 77 participants enrolled from 9/2020-12/2022, average age at MBC diagnosis and survey was 35.9 (range: 22-39) and 38.3 years (range: 27-46), respectively. Most were non-Hispanic white (83.8%) and 40.3% reported their diagnosis caused some financial problems. Many were concerned about fertility (27.0%), long-term treatment side effects (67.6%), exercise (61.6%), and diet (54.1%). Select concerns varied significantly by age, race/ethnicity, and education. Younger women at survey reported greater concern about familial cancer risk (p = 0.028). Women from minority racial/ethnic groups more frequently reported issues talking about their cancer to family/friends (p = 0.040) while those with more education were more frequently concerned with long-term effects of cancer on their health (p = 0.021). CONCLUSION: Young women living with MBC frequently report psychosocial, health, and cancer management concerns. Tailoring supportive care and communications to address prevalent concerns including disease progression and treatment side effects may optimize wellbeing.

Sexuality, intimacy, and body image among adolescents and young adults with cancer: a qualitative, explorative study.

AIM: The aim of this study was threefold: (1) to explore Danish adolescents and young adults' (AYAs) thoughts concerning sexual health particularly focusing on sexuality, intimacy, and body image throughout a cancer trajectory, (2) to investigate how AYAs experience healthcare professionals address of- and respond to sexual health issues, and (3) to identify AYAs' suggestions on how to support conversation about sexual health. METHODS: A qualitative, single-center study was conducted, including AYAs (18-29 years) diagnosed with cancer recruited at the University Hospital of Copenhagen, Rigshospitalet. Individual semi-structured interviews were conducted from January-February 2023, recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: Twelve participants were interviewed, aged 20-29; five were diagnosed with hematological- and seven with oncological cancer. Our analyses yielded three themes: (1) sexuality and body image as part of the identity, (2) excluding relatives in conversations about sexual health, and (3) uncertainty how to discuss sexual health with healthcare professionals. Finally, the AYAs' suggestions to support conversations about sexual health were organized into six thematic categories. CONCLUSION: In this study, participants experienced altered sexual subsequent impacts on body image and self-esteem during their cancer trajectory. While some adapted to these changes, discussing them with healthcare providers was difficult, especially in the presence of relatives, as the AYAs wanted to shield them from additional concerns. To enhance support, AYAs suggest regular discussions on sexual health and the use of a dialog tool by healthcare professionals.

Psychiatry and interdisciplinary pediatric palliative care: a scoping review.

BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most current literature based on discipline, geography, population, methodology, and themes among interdisciplinary PPC teams and the management of psychological distress in AYAs. METHODS: Using a scoping review design, a protocol was registered in Open Science Framework (https://osf.io/fb48n/). Sources for evidence included online databases (Scopus, PubMed, Embase, PsycInfo, CINAHL), Google Scholar, clinical manuals, texts, national organization webpages, and reference lists, all searched June, 2023. Interviews with content experts and authors identified additional sources. Those describing interdisciplinary palliative care (PC) and management of psychological/psychiatric distress in seriously ill AYAs, written in English, and completed in the U.S. between 2018-2023 were included. International citations were included if American literature was reviewed, or if authors described internationally developed PC standards by which American providers must practice. Clear and comprehensive data charting was completed by an independent reviewer, using a deductive approach with a standardized data-charting form developed prior to extraction. RESULTS: Sixty-five references met inclusion criteria. Psychologists most frequently published in the past 5 years regarding integration of their care into palliative teams. Authors wrote from eastern U.S., qualitatively studying the PC team in the oncology space. Of eight themes identified, barriers, facilitators, and interventions were most frequently reported. CONCLUSIONS: Role delineation among PPC teams can be difficult in the management of psychological distress, due to lack of training and consistent collaboration models among cancer and non-cancer populations. Current literature highlights a large gap in psychological/psychiatric training. However, optimized pain control, routine screening of distress, open/honest/developmentally appropriate communication, and early advance care planning are interventions by which palliative providers can begin managing psychological distress in seriously ill AYAs. While the presence of psychologists and psychiatrists is widely variable among PPC teams, their expertise can vastly advance the field of PC, through collaboration, education, research, and advocacy.

Employment outcomes of adolescent and young adult cancer survivors and their partners: A Dutch population-based study.

BACKGROUND: The aim of this population-based registry study was to examine the impact of cancer on employment outcomes in adolescent and young adult (AYA) survivors and their partners and associated sociodemographic and clinical characteristics. METHODS: A total of 2456 AYA cancer patients, diagnosed in 2013 and aged 18 through 39 years old, were selected from the Netherlands Cancer Registry and linked to employment data from Statistics Netherlands, from which 1252 partners of AYAs could be identified. For both patients and their partners, a control group with same age, migration background, and sex was selected. The impact (i.e., causal effect) was estimated by implementing a doubly robust difference-in-differences method, from 3 years before to 5 years after cancer diagnosis. RESULTS: Patients suffered a reduced employment probability (3.8 percentage points) and number of hours worked when employed (3.8%). This effect was larger for females, and individuals with a migration background, high tumor stage, or diagnosed with a central nervous system tumor/hematologic malignancy. In regard to employment, no significant effect could be found for the patients' partners, although a 5.5 percentage-point increase in employment probability was found in partners who were either unemployed or worked fewer than 400 hours. CONCLUSIONS: A cancer diagnosis significantly affects employment outcomes of AYA patients with cancer. Patients at risk should have access to services such as job counseling to help them return into society in the best possible way. No objective impact on partners' employment outcomes was found; however, subjective well-being was not taken into account. PLAIN LANGUAGE SUMMARY: This study estimated the causal effect of a cancer diagnosis on employment outcomes. Adolescent and young adult cancer survivors face a reduction in both employment probability and the number of hours worked when employed. Partners that were unemployed or worked the least number of hours a year before diagnosis had a 5.5 percentage-point increased employment probability, but for other partners effects are small.