Male Adolescents And Young Adults Research Articles

Experiences and Outcomes of Fertility Testing in Male Adolescents and Young Adults with Sickle Cell Disease

Introduction: Most adolescents and young adults (AYAs) with sickle cell disease (SCD) desire future biological parenthood. Recent research shows abnormal semen parameters in men with SCD, yet few studies have been conducted to elucidate fertility related impacts of SCD and its treatments among male AYAs with SCD. AYAs face many barriers to receiving care that could also impact their ability to complete fertility testing (i.e., via semen analysis). Thus, the aims of this study were to: 1) assess the feasibility of obtaining semen samples at a reproductive diagnostic center from male AYAs with SCD, 2) describe AYAs' and caregivers' experiences with testing, and 3) examine semen parameters among AYAs who completed testing. Methods Male AYAs with SCD (14-22 years, any genotype) and their caregivers were recruited to a single site study from November 2022-April 2023; the protocol involved completion of a novel web-based reproductive health program (i.e., FUTURES) describing potential fertility-related aspects of SCD and its treatments. AYA participants ≥18 years of age and AYA-caregiver dyads (if the AYA was <18 years old) were subsequently informed of the option for the AYA to obtain a semen analysis at an off-site reproductive diagnostic center (with costs of testing and transportation covered). Up to three attempts were made to contact AYA participants about their interest in testing. If interested, an order was sent to the testing center who then coordinated testing with the AYA. Research staff made up to three attempts to follow up with AYAs who reported interest but did complete testing. AYAs (and caregivers, if <18) who completed testing were notified of their results by a hematologist and invited to complete a facilitators interview. AYAs (and caregivers, if <18) who did not complete testing were invited to complete a barriers interview. Research staff conducted, transcribed, and analyzed interview transcripts for themes that demonstrated strong interrater reliability (κ=.94). Testing was considered feasible if ≥25% of AYAs completed testing. Demographic and treatment characteristics were abstracted from the medical record. Results Thirty-three AYAs completed FUTURES; five (15%) completed testing (Table 1) and a facilitators interview. Ten AYAs completed a barriers interview. Of the 18 enrolled caregivers, one completed a facilitators interview and seven completed a barriers interview. Facilitators included: 1) interest in learning about reproductive health [“ I told him ... sometimes people don't know if it is too late {to have a biological child} and if we checked we could have done something about it.” - Caregiver], 2) assistance coordinating testing appointments [“ Helping to coordinate {made testing easier} because I kept on missing the appointments.” -AYA] 3) alleviating costs [“ It {the funding} helped a lot because they {research team} had to pay and we didn't have to worry about it.” - Caregiver]. Barriers included: 1) discomfort [“ I don't think anything could have helped with the decision... he was just a little uncomfortable.” -Caregiver], 2) time [“ It is something I'm interested in, but not at the moment. I'm catching up on a lot of things.” -AYA], 3) transportation [e.g., “ I don't have a car. I didn't have a way to get there.” -AYA], and 4) forgetting the appointment [“ We just forgot about the appointment.” -Caregiver]. Conclusions Despite providing reproductive health education, compensation, and access to a local testing center, obtaining semen samples at an offsite center from male AYAs with SCD was not feasible. Abnormal semen parameters were noted across genotypes. While azoospermia and cryptozoospermia were noted in those on prolonged hydroxyurea treatment, oligospermia was also found in an individual with less severe disease and no hydroxyurea exposure. These findings underscore the importance of larger, longitudinal studies to examine semen parameters in male AYAs with SCD, ideally starting in mid-puberty. Further, qualitative findings highlight the need for: 1) developmentally and culturally appropriate fertility education, 2) innovative methods to collect semen samples (e.g., mail-in testing), and 3) advocacy to increase access to affordable reproductive healthcare. This is crucial to elucidate the fertility impacts of SCD and hydroxyurea and because the curative options that can also affect fertility are expanding for this underserved minority population.

Fertility assessment and treatment in adolescent and young adult cancer survivors.

In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status, and may under- or overestimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Posttreatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.

The Impact of Systemic Oncological Treatments on the Fertility of Adolescents and Young Adults-A Systematic Review.

Over the past decades, advancements in oncological treatments have led to major improvements in survival. Particularly for adolescents and young adults (AYAs), fertility is an important concern in cancer survivorship. The purpose of the review is to provide physicians with a practical overview of the current knowledge about the impact of systemic oncological treatments on the fertility of female and male AYAs. A systematic review was performed based on relevant articles obtained from 4 databases up until 31 December 2022. The mechanisms of gonadotoxicity and the concurrent risk is described for the following categories: chemotherapy, targeted therapy and immunotherapy. For the category "chemotherapy", the specific effects and risks are listed for the different classes and individual chemotherapeutics. In the category "targeted therapy", a distinction was made between tyrosine kinase inhibitors (TKIs) and monoclonal antibodies. Information concerning immunotherapy is scarce. The effects of chemotherapy on fertility are well investigated, but even in this category, results can be conflicting. Insufficient data are available on the fertility effects of targeted therapy and immunotherapy to draw definitive conclusions. More research is needed for these therapies and their evolving role in treating cancers in AYAs. It would be useful to include fertility endpoints in clinical trials that evaluate new and existing oncological treatments.

Sexual dysfunction in male childhood cancer survivors and adolescent and young adult survivors of hematologic malignancies.

Sexual Health is an important aspect of overall health and quality of life (QoL) among adolescent and young adult (AYA) as well as childhood cancer survivors (CCS). Sexual health encompasses psychosocial, physical, developmental, emotional and relationship factors that impact sexual function. Cancer and its associated treatments are associated with negative effects on sexual health, body image, relationships, as well as overall physical and mental health. Data shows that CCS are known to experience diminished QoL compared to their peers. However, limited information is available to guide the assessment and treatment of sexual dysfunction in AYA and CCS. Further, exploration into specific cancer types, treatment methods and their resultant effects on sexual function within these populations is far more limited. We conducted an extensive review of the literature that focused on sexual dysfunction in male survivors of hematologic malignancies (HM). Our review identified an increased incidence of sexual dysfunction within male AYA and CCS of HM, and the negative impact this has on overall QoL. Our results show the degree to which survivors of HM experience increased sexual dysfunction, and the therapies and pathophysiologic mechanisms that may contribute to the development of sexual dysfunction within this population. These findings highlight the lack of research on this topic and need for further exploration into AYA and CCS sexual health to improve patient care and close the knowledge gaps to better assess and treat sexual dysfunction in this patient population.

Preferences for accessing sexual and reproductive health services among adolescents and young adults living with HIV/AIDs in Western Kenya: A qualitative study.

Despite the need, adolescents and young adults (AYAs) in resource-limited settings have limited access to sexual and reproductive health (SRH) care services for improved health outcomes. This is worse for AYAs living with HIV in resource-limited settings where much is unknown about contexts and issues inhibiting access to SRHs. We explored adolescents', healthcare workers, and caregivers' preferences for access to sexual and reproductive health services for adolescents and young adults living with HIV. We conducted 30 in-depth interviews and 8 focus group discussions among a subset of AYA aged 14-24 living with HIV, healthcare workers, and caregivers/parents. We recruited participants from Lumumba Sub-County Hospital (KLM) and Kisumu County Referral Hospitals in Kisumu County (KCH). Trained and experienced qualitative research assistants 5-10 years older than the adolescents conducted interviews and facilitated discussions using guides designed to elicit detailed views and perspectives on sex and sexuality, access to SRH services, challenges of AYA living with HIV, and potential interventions to improve access to SRH services. Audio files were transcribed verbatim and translated to English where necessary before coding and analysis. We applied constant comparative analysis for theme and content to arrive at our conclusions. Our analysis yielded two main themes: preferences for a venue for SRH services and choices for qualities of an SRH counsellor. We found that AYAs generally preferred receiving SRH services to be co-situated within clinical facilities. We also observed gender differences in the qualities of SRH providers, with male AYAs preferring older male service providers compared to females who preferred younger female providers close to their age. The study highlighted the preferences of AYAs for accessing SRH, which need to be considered when designing their health programs. Further, AYAs seem to endite health systems to individualize access to SRH for AYAs living with HIV by providing a combination of attributes that meet individual preferences.

Patient-Reported Sexual Function Among Young Adult Cancer Survivors.

Purpose: Reproductive health and sexual function are important to survivors of Adolescent and Young adult (AYA) cancers. We evaluated the prevalence of sexual dysfunction and factors associated with dysfunction using the Patient-Reported Outcomes Measurement Information System (PROMIS) sexual function (SexFS) measure in AYAs (15-39 years old at diagnosis) enrolled in a cancer survivorship cohort. Materials and Methods: Using a cross-sectional survey of a tertiary medical center-based cancer survivorship cohort, we determined the mean PROMIS SexFS v1.0 T-scores and prevalence of scores that were indicative of dysfunction (>1/2 standard deviation [SD] below reference population mean). Multivariable generalized linear regression was performed to identify factors associated with lower scores. Results: We identified 284 AYA cancer survivors, most of whom were women (70%). The mean age at survey was 36.0 years (SD = 7.9). Overall, 31% of females and 19% of men had clinically significantly lower scores than the general U.S. population in the domain of interest, and 13% of women and 6% of men had abnormal scores for satisfaction. Twenty-six percent of male AYAs reported erectile dysfunction. The rate of sexual inactivity in the last 30 days was 27%. Low levels of physical activity were associated with lower PROMIS scores for interest in sexual activity in both men and women, and for global satisfaction with sex life in women only. Conclusions: Our results suggest that low interest in sexual activity is common among survivors of AYA cancers. Low levels of physical activity may be associated with lower levels of interest in and satisfaction with sexual activity in this population.

Sexual Dysfunction Among Adolescent and Young Adult Men Diagnosed with Cancer.

Purpose: Adolescent and young adult (AYA) cancer patients frequently demonstrate sexual dysfunction; however, there is a lack of data quantifying the severity and frequency. Methods: Males aged 18-39 years, diagnosed with cancer of any kind and who were scheduled to begin, were actively receiving, or had completed cancer treatment within 6 months, were offered validated surveys during their oncology appointment. These surveys included the International Index of Erectile Function (IIEF-6), Masturbation Erection Index (MEI), 36-Item Short Form Survey, and 5-point Likert scales to assess their desire and ability to engage in sex and masturbation. Results: Forty subjects completed the IIEF survey with a mean score of 17.7 ± 11, erectile dysfunction (ED) prevalence accordingly was 58%. Thirty-eight subjects completed the MEI with a mean score of 25.3 ± 5.3, ED prevalence was again 58%. Age and IIEF scores demonstrated a statistically significant (p < 0.05, n = 38) Pearson's correlation coefficient of 0.40, patients younger than 30 years had an ED prevalence of 72% (mean IIEF 13), whereas patients aged 30 years and older had an ED prevalence of 45% (mean IIEF 22). All treatment modalities had ED rates >30%: chemotherapy demonstrated the highest prevalence at 64% (mean IIEF 17), whereas radiation therapy had the lowest prevalence at 33% (mean IIEF 23). Conclusion: This study demonstrates that the prevalence of sexual dysfunction among male AYA patients undergoing treatment for cancer is high. AYA oncologists should discuss potential sexual health concerns when treating this population. The exact cause of ED (non-organic vs. organic) within this group should be explored further.

Boys Don't Cry: Examining Sex Disparities in Behavioral Oncology Referral Rates for AYA Cancer Patients

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

Unmet needs in adolescents and young adults with cancer: A mixed-method study using social media

PurposeThe purpose of this study is to identify and compare the unmet needs of adolescents and young adults (AYAs) with cancer by age and gender. Design and methodsThis is a mixed-methods study to analyze textual data from blog posts on AYAs' unmet needs. Themes were identified using a qualitative descriptive method with content analysis, and a quantitative method was used to compare themes by age and gender. ResultsThe findings from blog posts of 100 AYAs showed that AYAs with cancer expressed somewhat different needs by age and gender. Young adults (26–39 years) with cancer tended to describe significantly more feelings of fear (p = .043) and parenting needs (p < .001) and significantly fewer educational needs (p < .001) than did emerging adults (18–25 years) with cancer. Female AYAs with cancer described significantly more feelings of guilt (p = .020), sexual needs (p = .003), fertility issues (p = .023), and social needs (p = .013) than did male AYAs with cancer. There were no statistically significant differences in the remaining themes between age and gender groups, although how they described unmet needs differed qualitatively. ConclusionsAYAs with cancer have various unmet needs and their unmet needs were different by age and gender. Practice implicationsNurses should proactively provide integrated systematic screening by offering a safe, non-judgmental environment to encourage AYAs to express their needs across their cancer journey. Nurses also should respond with developmentally appropriate support, resources, and referrals based on these expressed needs.

Sex Differences in Cancer-Specific Survival Are Pronounced during Adolescence and Young Adulthood: A SEER Population-Based Study.

Sex differences in cancer survival may be related to hormonal changes during puberty and menopause; therefore, we investigated sex differences in the cancer-specific survival rates of children, adolescents and young adults (AYAs), and older adults with sex-nonspecific cancers. We interrogated the November 2019 submission of the SEER 18 database and included microscopically confirmed cases of first primary malignant tumors. We stratified the dataset into children (&lt;15 years), AYAs (modified; 15-49 years), and older adults (≥50 years). For each age group, we used the Kaplan-Meier method to estimate the sex-stratified 5-year all-site cancer-specific survival probabilities. Of 3,386,276 eligible patients, 45,124 (1.3%) were children, 548,158 (16.2%) were AYAs, and 2,792,994 (82.5%) were older adults. The 5-year all-site cancer-specific survival probabilities were 84.0% (95% CI, 83.5%-84.5%) for boys, 84.8% (95% CI, 84.3%-85.3%) for girls, 70.4% (95% CI, 70.2%-70.6%) for male AYAs, 80.8% (95% CI, 80.6%-81.0%) for female AYAs, 52.0% (95% CI, 51.9%-52.1%) for older adult men, and 52.2% (95% CI, 52.1%-52.3%) for older adult women. The all-site survival rate for female patients with cancer is markedly higher than for male patients with cancer during adolescence and young adulthood, although this difference diminishes in older adulthood.

The Need for Parent-Adolescent Conversations About Racial Discrimination in HIV Prevention Interventions

Black male adolescents and young adults (AYA) have eight times the rate of HIV compared to white male AYA [1]. To address this significant disparity, interventions that consider the social contexts and lived experiences of black males are critical, including racial discrimination and the role of parents in racial socialization and identity development [2–5]. Black males experience racial discrimination as early as preschool [6]. For example, black students are more likely than white students to be disciplined, expelled, and to be placed in juvenile detention facilities, especially black male students [6].

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals.

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.

Trends in Cancer Incidence in US Adolescents and Young Adults, 1973-2015

Previous studies have demonstrated that adolescents and young adults (AYAs) with cancer are a distinct cancer population; however, research on long-term epidemiological trends and characteristics of cancers in AYAs is lacking. To characterize the epidemiology of cancer in AYAs aged 15 to 39 years with respect to (1) patient demographic characteristics, (2) frequencies of cancer types, and (3) cancer incidence trends over time. This retrospective, serial cross-sectional, population-based study used registry data from the Surveillance, Epidemiology, and End Results (SEER) database from January 1, 1973, to December 31, 2015 (SEER 9 and SEER 18). The study population was from geographically distinct US regions, chosen to represent the racial and ethnic heterogeneity of the country. Initial analyses were performed from January 1 to August 31, 2019. Incidence rates and descriptive epidemiological statistics for patients aged 15 to 39 years with invasive cancer. A total of 497 452 AYAs diagnosed from 1973 to 2015 were included in this study, with 293 848 (59.1%) female and 397 295 (79.9%) White participants. As AYAs aged, an increase in the relative incidence of carcinomas and decrease in the relative incidence of leukemias, lymphomas, germ cell and trophoblastic neoplasms, and neoplasms of the central nervous system occurred. Among the female AYAs, 72 564 (24.7%) were diagnosed with breast carcinoma; 48 865 (16.6%), thyroid carcinoma; and 33 828 (11.5%), cervix and uterus carcinoma. Among the male AYAs, 37 597 (18.5%) were diagnosed with testicular cancer; 20 850 (10.2%), melanoma; and 19 532 (9.6%), non-Hodgkin lymphoma. The rate of cancer in AYAs increased by 29.6% from 1973 to 2015, with a mean annual percentage change (APC) per 100 000 persons of 0.537 (95% CI, 0.426-0.648; P < .001). Kidney carcinoma increased at the greatest rate for both male (APC, 3.572; 95% CI, 3.049-4.097; P < .001) and female (APC, 3.632; 95% CI, 3.105-4.162; P < .001) AYAs. In this cross-sectional, US population-based study, cancer in AYAs was shown to have a unique epidemiological pattern and is a growing health concern, with many cancer subtypes having increased in incidence from 1973 to 2015. Continued research on AYA cancers is important to understanding and addressing the distinct health concerns of this population.

Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15-39 Years): A Population-Based Study in The Netherlands 1990-2016.

Simple SummaryAdolescents and young adults (AYAs, aged 15–39 years) with cancer form a distinct patient population within the oncology care setting that is often overlooked in favour of paediatric and older adult patients. As such, specific knowledge on AYAs and their distinct spectrum of cancers is limited. Worldwide, cancer is increasing and it is among the major causes of death among AYAs. Cancer prognosis among AYAs has also been shown to lag behind that of younger and older patients suffering from similar diseases. To address these problems, better understanding of AYA cancers is needed. This study aims to provide an overview of the specific cancer trends among AYAs and the changes that have occurred in the Netherlands since 1990 in terms of incidence, survival, and mortality. This information will provide a solid foundation from which to guide future studies upon, aimed at acquiring more detailed cancer knowledge within the AYA domain.Adolescent and young adult (AYA) cancer patients, aged 15–39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. Data on all malignant AYA tumours diagnosed between 1990–2016 (n = 95,228) were obtained from the Netherlands Cancer Registry. European age-standardised incidence and mortality rates with average annual percentage change (AAPC) statistics and five-year relative survival rates were calculated. The overall cancer incidence increased from 54.6 to 70.3 per 100,000 person-years (AAPC: +1.37%) between 1990–2016, and increased for both sexes individually and for most cancer types. Five-year relative survival overall improved from 73.7% in 1990–1999 to 86.4% in 2010–2016 and improved for both sexes and most cancer types. Survival remained poor (<60%) for rhabdomyosarcoma, lung, stomach, liver, bladder, and pancreatic carcinomas, among others. Mortality rates among male AYAs overall declined from 10.8 to 6.6 (AAPC: −1.64%) and from 14.4 to 10.1 per 100,000 person-years (AAPC: −1.81%) for female AYAs since 1990. Mortality rates remained unchanged for male AYAs aged 20–24 and 25–29 years. In conclusion, over the past three decades, there has been a considerable increase in cancer incidence among AYAs in the Netherlands. Meanwhile, the survival improved and the mortality overall declined. Survival at five-years now well exceeds above 80%, but did not do so for all cancer types.

Supporting Decision-Making on Fertility Preservation Among Adolescent and Young Adult Women With Cancer.

Adolescents and young adults (AYAs) with cancer constitute approximately 70,000 patients diagnosed each year. Survival rates for AYAs with cancer have increased steadily in recent decades due to improvements in therapeutic regimens and early detection. Given the large and growing number of AYA cancer survivors, additional research is needed on the immediate and long-term psychosocial support required for this population including family planning and fertility. Fertility and fertility preservation in female AYAs, in particular, is historically understudied and has psychologically relevant ramifications distinct from male AYAs. Decision science can contribute to this area of oncological care and has implications for clinical encounters and research concerning female AYA patients with cancer. Patient-centered care and shared decision-making that integrates recent research regarding fertility preservation in the context of cancer.

Cancer Among Adolescents and Young Adults Between 2000 and 2016 in France: Incidence and Improved Survival.

Purpose: This study was undertaken to determine cancer survival and describe the spectrum of cancers diagnosed among French adolescent and young adult (AYA) population. Methods: All cases of cancer diagnosed in 15-24 years, recorded by all French population-based registries (18% of the French population), over the 2000-2016 period, were included. Age-standardized incidence rates, conventional annual percentage change (cAPC) of incidence over time, and 5-year overall survival (5yOS) were calculated. Results: We analyzed 2734 cancer diagnoses in adolescents and 4199 in young adults. Overall incidence rates were 231.9/106 in 15-19 year olds and 354.0/106 in 20-24 year olds. The most frequently diagnosed cancers in male AYA were malignant gonadal germ-cell tumors (GCT), Hodgkin lymphoma (HL), and malignant melanoma and were HL, thyroid carcinoma, and malignant melanoma in females. Cancer incidence was stable over time with a cAPC of 0.8% (p = 0.72). For all cancers combined, 5yOS was 86.6% (95% CI: 85.8-87.4), >85% for HL, non-Hodgkin lymphomas (NHL), GCT, thyroid carcinomas, and malignant melanomas, and around 60% and lower for osteosarcomas, Ewing tumors, hepatic carcinomas, and rhabdomyosarcomas. The 5yOS has significantly improved from 2000-2007 to 2008-2015 for all cancers pooled, with a substantial gain of 4% for 15-19 year olds and 3% for 20-24 year olds. Conclusion: Notwithstanding the encouraging results for some cancers, and overall, persistent poorer survivals in AYA were shown compared to children for acute lymphoblastic leukemia, osteosarcoma, Ewing tumor, rhabdomyosarcoma, and malignant hepatic tumors. These disparities require further investigation to identify and address the causes of these inferior outcomes.

"We Can Always Adopt": Perspectives of Adolescent and Young Adult Males with Cancer and Their Family on Alternatives to Biological Parenthood.

Purpose: Approximately half of male childhood cancer survivors experience impaired fertility, which is known to cause psychological distress. Yet, less than 50% of at-risk adolescent and young adult (AYA) males pursue fertility preservation (FP) at diagnosis. Alternatives to biological parenthood (e.g., adoption/sperm donation) may be considered, but little is known about perspectives regarding these alternatives among AYA males and their families. Methods: Families of AYAs were recruited for a mixed-method study examining FP decisions at cancer diagnosis. One month later, 48 participants from 20 families (18 male AYAs, 12-22 years of age, 19 mothers, 11 fathers) completed semistructured interviews, including two questions about: (a) alternative routes to biological parenthood, and (b) their knowledge about the processes involved and/or challenges associated with such alternatives. Verbatim transcripts were coded for thematic content using the constant comparison method. Results: Three main themes were identified, of which two represent both ends of considering alternative parenthood: (a) Willingness to consider alternatives to biological parenthood, primarily adoption; (b) No consideration/discussion of alternative family building options; and (c) Variable knowledge of alternatives and/or associated challenges. Notably, more AYAs than parents mentioned a specific preference for biological children. Conclusions: One-month postcancer diagnosis, most parents reported willingness to consider alternatives to biological parenthood for their sons, while AYA males were less knowledgeable or open to these options. Future research should prospectively examine how these attitudes affect FP decisions before treatment. Medical and psychosocial providers should counsel patients and survivors accordingly to optimize reproductive outcomes and prevent psychosocial distress if parenthood goals are unfulfilled.

Evaluating provider communication in pediatric chronic kidney disease care using a global coding system

ObjectiveAmong adolescents and young adults (AYAs) with chronic illness, effective provider communication is essential for patient-centered care during a sensitive developmental period. However, communication in chronic illness care for AYAs is not well studied. Our objectives were to describe the provider communication skills in pediatric chronic kidney disease (CKD) care visits; and determine if communication skills differ by AYA characteristics. MethodsWe adapted a global consultation rating system for pediatric subspecialty care using audiotaped clinic encounters of 18 pediatric nephrologists with 99 AYAs (age M(SD) = 14.9(2.6)) with CKD stages 1–5 and 96 caregivers. We hypothesized that provider communication skills would differ by AYA characteristics (age, gender, and race). ResultsThe strongest provider skills included initiating the session and developing rapport; lowest rated skills were asking patient’s perspective and checking understanding. Communication scores did not consistently differ by AYA age or race, but were rated higher with female AYAs in several domains (ps<0.05). ConclusionsPediatric providers generally had adequate or good communication scores with AYAs, but improvement in certain skills, particularly with male AYAs, may further support patient-centered care. Practice implicationsTo achieve consistent, patient-centered communication with AYAs, an observation-based global assessment may identify areas for provider improvement.

Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study.

Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis. Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population.

Human papillomavirus infection among male adolescents and young adults with perinatally-acquired HIV and without HIV in Thailand.

HIV infection may increase the risk of persistent human papillomavirus (HPV) infection and complications. Male adolescents and young adults (AYAs) with perinatally-acquired HIV (PHIV) and without HIV in Thailand were matched by age and lifetime number of sexual partners. HPV infection at oral, anal, penile, and scrotal sites was detected by polymerase chain reaction. A total of 49 PHIV and 47 HIV-uninfected male AYAs (median age 18 [17–20] years) were enrolled (June 2013–September 2014). Overall, 18 were men who have sex with men (MSM) (12% of PHIV, 26% of HIV-uninfected AYAs; P = 0.12). Among the PHIV, the median (interquartile range) CD4 cell count was 573 (434–747) cells/mm3and 69% had HIV RNA &lt;40 copies/ml. The prevalence of any HPV infection was 61% in PHIV and 49% in HIV-uninfected AYAs ( P = 0.23) and that of high-risk HPV was 33% in PHIV and 28% in HIV-uninfected AYAs ( P = 0.59). Among those with HPV, 55% had any high-risk HPV type and 28% had HPV-16 and/or HPV-18. In multivariate models, smoking (OR 6.10, 95% CI, 1.19–31.35, P = 0.01) and prior history of STI symptoms (OR 5.01, 95% CI, 1.63–15.40, P = 0.004) were associated with high-risk HPV infection. HPV vaccination in early adolescence presents a valuable but missed prevention opportunity.