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Background: Despite being considered a key component of quality-of-life, sexual health concerns in adolescents and young adults (AYA) patients with cancer (aged 15–39 years old) are often unmet due to barriers from both patients and health care professionals (HCPs). Investigation into policy and practice tools in this scope of practice is also limited. Aim: To review the literature on policy and practice tools in AYA oncosexology. Method: A scoping review was conducted using four databases: Medline, EMCARE, EMBASE, and PsycINFO, based on the Joanna Briggs Institute Scoping Review methodology. Retrieved articles were extracted into Covidence, followed by two screening rounds. Descriptive and basic content analyses were performed for evidence synthesis. Results: Seventy-four articles were included after screening rounds and citation searches. Overall, oncosexology policy and practice tools were categorized into screening tools (11 articles), guidelines (38 articles), training programs (15 articles), service delivery initiatives (5 articles), and the evaluation of their feasibility/challenges to implementation (5 articles). Among these, only ten articles were specifically about the AYA population. They helped identify and resolve sexual health concerns in AYA patients with cancer by providing strategies to overcome communication barriers, treatment options, and information resources for patients, and by advocating for more HCP education on this topic. Conclusion: The results warrant the need for more research, implementation and expansion of policy and practice tools for sexual health issues in AYA patients with cancer. [ABSTRACT FROM AUTHOR]

Rapid and affordable tumor molecular profiling has led to an explosion of clinical and genomic data poised to enhance the diagnosis, prognostication and treatment of cancer. A critical point has now been reached at which the analysis and storage of annotated clinical and genomic information in unconnected silos will stall the advancement of precision cancer care. Information systems must be harmonized to overcome the multiple technical and logistical barriers to data sharing. Against this backdrop, the Global Alliance for Genomic Health (GA4GH) was established in 2013 to create a common framework that enables responsible, voluntary and secure sharing of clinical and genomic data. This Perspective from the GA4GH Clinical Working Group Cancer Task Team highlights the data-aggregation challenges faced by the field, suggests potential collaborative solutions and describes how GA4GH can catalyze a harmonized data-sharing culture.

Objective: Masculinities have been explored in men with testicular cancer (TC), though limited contemporary research is available on traditional masculine norms important to masculine self‐perception. The purpose of this research was to explore the discourse of TC experience in relation to masculine self‐perception. Methods: A qualitative descriptive study was conducted consisting of semi‐structured interviews with 21 men. Men were aged between 31 and 47 (Mage = 35.7). Most men were diagnosed with Stage 1 cancer (66.6%), all men had finished active treatment and time since diagnosis ranged from 17.3 to 71.8 months (M = 47.2). Independent coding was conducted by two researchers and was refined in coding meetings with authors. Themes were developed in a predominantly deductive manner, and analysis of themes was undertaken using a reflexive analysis approach. Results: Traditional masculine norms showed differing relationships to masculine self‐perception. Two main themes were identified [1] Maintained or enhanced masculine self‐perception and [2] threats to masculine self‐perception. Subthemes demonstrated that maintaining emotional control, strength and 'winning' was important to men, and reduced physical competencies (i.e., strength, sexual dysfunction, virility) challenged self‐perception. Strict adherence to traditional norms in response to threatened self‐perception related to psychological distress. Conclusion: Leveraging traditionally masculine norms such as physical strength and control and developing flexible adaptations of masculinities should be encouraged with men with TC to retain self‐perception and potentially enable better coping. Masculine self‐perception of gay/bisexual men may centre around sexual functioning, though further research is required. [ABSTRACT FROM AUTHOR]

Objective: Psychological distress is common in men with testicular cancer (TC), and masculinities may work to explain this. This study aimed to compare masculinities and distress in TC and healthy control (HC) populations and explore relationships between correlates of distress (psychological flexibility and coping style) and masculinities in TC. Methods: A cross‐sectional, online survey was completed by 92 men with TC (Mage = 34.8) and 90 HC (Mage = 30.7). Measures included psychological distress (Patient‐Reported Outcomes Measurement Information System Depression/Anxiety, fear of cancer recurrence inventory‐short form), masculinities (gender role conflict‐short form, inventory of subjective masculinity experiences/subjective masculinity stress scale, masculinity in chronic disease inventory), coping style (mini‐mental adjustment to cancer) and psychological flexibility (comprehensive assessment of acceptance commitment therapy). Linear regressions were conducted to compare groups and analyse associations. Results: There were no differences in masculinities or psychological distress between populations (all p > 0.05 and all Cohen's d < 0.20), except for subjective masculine stress and restrictive affectionate behaviour between men. For men with TC, restrictive affection/emotion, conflicts between family/work and subjective masculine stress were associated with psychological distress (rs 0.21–0.58). Optimistic action was negatively associated with depression/anxiety, helplessness/hopelessness coping (rs −0.27 to −0.42) and positively associated with psychological flexibility (r = 0.35). Conclusions: Masculinities are implicated in psychological distress in men with TC. Psychological flexibility as well as leveraging masculine beliefs (e.g., optimistic action) may be modifiable targets to reduce distress in men with TC. [ABSTRACT FROM AUTHOR]

A key aspect of developmentally appropriate healthcare is the provision of age-appropriate environments. In 2016, the Youth Cancer Centre (YCC) located at Peter MacCallum Cancer Centre was built as an ambulatory hub for adolescent and young adults (AYA). This study examined what components of the YCC built environment were utilised and which aspects could be improved. Two questionnaires (AYA; carers) were developed that evaluated the YCC using quantitative analysis. In total, 81 individuals participated (n=49 AYA; n=32 carers). The most common reasons for YCC usage included: to attend clinical appointments with the AYA team; to use the kitchen facilities; to rest/ relax; and to attend group programs and watch TV. The lack of peer connection and the ability to rearrange the space to suit individual needs were potential gaps identified by both cohorts. There is an ongoing need for research into the role of age-appropriate healthcare environments and their effect on the patient experience. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this review was to synthesise the literature on the topic of masculinity and testicular cancer (TC) and investigate the relative impact of TC on men's view of their masculinity.Methods: Searches were conducted across four databases (MEDline, PsycInfo, CINAHL Plus and Scopus) for articles published before April 2022 that included (1) TC and (2) masculinity. Two researchers independently rated studies for inclusion with a third resolving conflicts. Of the 6464 articles screened, 24 articles (10 quantitative and 14 qualitative) were included in the review. Articles were rated for quality and a narrative synthesis was performed.Results: Overall, results indicated some men experience a shift in the way they relate to their sense of masculinity following diagnosis and treatment for TC. Being single and without children was related to the experience of negative masculinity-related outcomes, possibly due to a compounding lack of relational support and being unable to conform to protector, provider traditions. Men who described testicle loss as symbolic of their diminished masculinity were also negatively impacted. However, recent, high-quality literature on the topic using standardised masculinity measures was limited.Conclusion: Some men experience a reduced sense of masculinity after TC, however the impact of TC on masculinity remains person dependent. Further research using validated masculinity measures is required to uncover psycho-social variables that may account for whether and how meaning is made between TC and its treatment and any subsequent impact on perceived masculinity. Such factors may better support these men in life beyond cancer.Systematic Review Registration: PROSPERO. International Prospective Register of Systematic Reviews: CRD42020185649. [ABSTRACT FROM AUTHOR]

Background: Higher rates of death by suicide are recognized both in individuals of any age with cancer and, separately, among adolescents and young adults (AYA) without cancer. Given this intersection, identifying risk factors associated with suicidal risk among AYA with cancer is critical. Objective: To identify characteristics associated with suicide among AYA with cancer. Methods: A retrospective analysis of AYA (aged 15–39) during 1975–2016 from the Surveillance, Epidemiology, and End Results database was conducted. Clinical and demographic factors associated with death by suicide among the AYA cancer population were compared to (i) US population normative data (standardized mortality ratios [SMRs]) and (ii) other AYA individuals with cancer (odds ratios). Results: In total, 922 suicides were found in 500,366 AYA with cancer (0.18%), observed for 3,198,261 person‐years. The SMR for AYA with cancer was 34.1 (95% confidence interval [CI]: 31.4–36.9). Suicide risk was particularly high in females (SMR = 43.4, 95% CI: 37.2–50.4), unmarried persons (SMR = 50.6, 95% CI: 44.7–57.1), those with metastatic disease (SMR = 45.2, 95% CI: 33.1–60.3), or certain histological subtypes (leukemia, central nervous system, and soft tissue sarcoma). Risk generally reduced over time, however remained elevated ≥5 years following a cancer diagnosis (SMR > 5 years = 28.1, 95% CI: 25.4–31.0). When comparing those who died from suicide and those who did not, the following factors demonstrated significant associations: sex (males > females), race (White ethnicity > Black/other ethnicity), relationship status (never married > other), and disease stage (distant > localized). Conclusions: Death due to suicide/non‐accidental injury is high compared to normative data, requiring increased awareness among health‐care providers, suicide risk monitoring in AYA, and appropriately tailored psychosocial interventions. [ABSTRACT FROM AUTHOR]

Increasing accessibility of fertility preservation (FP) options has permitted women to retain fertility following anticancer therapies. Several published guidelines have made recommendations for FP however their implementation into practice is currently unknown. In this review, we aim to provide oncology clinicians practical information about FP options for post-pubescent female cancer patients and recommendations for care delivery in order to answer preliminary questions and help triage whether FP referral is appropriate. Herein, we present a resource for oncology providers to guide them with FP discussions. Key points that are discussed in this critical review include: i) All cancer patients beginning a new plan of care should be informed of potential fertility risk. ii) If a woman requests further information on FP interventions, referral to a FP clinic should be made. iii) Given the evolving technologies in this area, patients should be informed of those which are proven and unproven, with oocyte and embryo preservation recognized as standard practice. iv) Random start (independent of menstrual cycle day) techniques are available to minimize oncologic treatment delays. v) Specific protocols for ovarian stimulation may be center-specific. vi) There is unlikely an increased cancer recurrence risk as a result of stimulation protocols in women with hormone-sensitive cancers. vii) Lastly, given the absence of consensus in the literature, routine use of GnRH analogs is not recommended for all cancer patients, however may be considered in select cases, such as high-risk women in whom definitive FP is not possible or feasible. [ABSTRACT FROM AUTHOR]

Simple Summary: A cancer diagnosis during adolescence or young adulthood presents unique medical and psychosocial challenges which must be addressed in the provision of quality, comprehensive cancer care. Tailoring services to the needs of this population requires careful work to identify, monitor and evaluate areas of care; however, published work in this area to guide service priorities is limited. This paper presents work done by the Australian Youth Cancer Services to operationalise and deliver quality care to adolescents and young adults with cancer, focusing on nationally coordinated service improvement initiatives and activity data collection in four areas that are of particular concern to young people diagnosed with cancer: clinical trial enrolment, oncofertility, psychosocial care and survivorship. This account may be instructive for health services seeking to improve the delivery and monitoring of cancer care provided to adolescents and young adults. Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults. [ABSTRACT FROM AUTHOR]