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Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment. [ABSTRACT FROM AUTHOR]

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15–30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583. [ABSTRACT FROM AUTHOR]

Purpose: Receiving a cancer diagnosis for young people is likely to adversely impact the individual's quality of life. Mindfulness-based interventions (MBIs) are an emerging strategy used to improve psychosocial well-being. However, challenges have been reported in relation to adherence and accessibility of face-to-face mindfulness programs among young people. This study examined the feasibility and acceptability of a mindfulness-based interactive e-Book to improve psychosocial well-being of young people with cancer. Methods: Concurrent mixed methods approach with a pre-intervention-post-intervention survey and semistructured interviews evaluated the feasibility and acceptability of a MBI delivered over a 6-week period, and its effect on psychosocial well-being of young people with cancer 15 to 24 years of age. Results: Of the 31 young people, both survivors and on active treatment, enrolled in the study, 20 (64.5%) completed the post-intervention survey. Textual data and interviews (n = 3) revealed that young people enjoyed the intervention and found it useful and easy to navigate, but wanted more attention paid to cancer-specific stressors, as well as opportunities for face-to-face or online interactions. Psychosocial well-being measures demonstrated a statistically significant decrease in depressive symptoms (2.35 to 1.25, p = 0.03) and psychological distress (23.63 to 19.79, p = 0.03), along with nonsignificant increases in mindfulness (20.05 to 22.9, p = 0.08) and quality of life (62.0 to 69.1, p = 0.13). Conclusion: Young people found the self-help MBI, delivered in an interactive e-Book platform, useful and acceptable. There were psychosocial benefits, although recruitment and retention were study challenges and can be improved in future research. [ABSTRACT FROM AUTHOR]

Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15–32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed. [ABSTRACT FROM AUTHOR]

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15–39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings. [ABSTRACT FROM AUTHOR]

Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interviews. Results: Four themes were identified using thematic analysis: adjusting to life after cancer, transition to community-based care, ongoing change and reform of health care, and supporting survivorship services. Adolescents and young adults (AYAs) and their families struggled with the transition from active treatment, which was complicated by ongoing disease/treatment impacts and a collective dearth of knowledge and resources on how to support AYAs during this time. Limited confidence and communication in patient–general practitioner relationships complicated the transition to community-based care, with treatment summaries and survivorship care plans an underused resource. A growing movement toward integrated, holistic, and equitable survivorship care was identified, but progress has been fragmented and under-resourced. Further research, funding, and advocacy are needed to support ongoing survivorship initiatives. Conclusions: Although some survivorship concerns are common across age groups, others are specific to AYAs' developmental stage, emphasizing the need for integrated, age-appropriate, and targeted survivorship services for AYAs. The transition from active treatment to longer term survivorship presents challenges for ongoing clinical care and support; change is needed at individual, service, and system levels to provide quality, sustainable, and integrated care to AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities. [ABSTRACT FROM AUTHOR]

Genetic testing is becoming increasingly available for adolescents who are undergoing cancer treatment or at risk of cancer predisposition syndromes. With this narrative review, we aimed to synthesize the evidence on psychosocial outcomes and adolescents' understanding of genetic testing—thus far, an underresearched topic. Both psychological benefits and harms of predictive testing were reported in adolescents from high-risk families. Harms were mainly related to cancer-specific distress and increased worries. Findings on genetic understanding were sparse. Future studies should focus on psychosocial outcomes and adolescents' understanding undergoing genetic testing and enabling access to genetic counseling pre-testing and post-testing. [ABSTRACT FROM AUTHOR]

Purpose: Cancer is a significant health concern for adolescents and young adults (AYAs; aged 15–24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. Methods: National data were extracted for 1980–2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. Results: In 2000–2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. Conclusions: Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship. [ABSTRACT FROM AUTHOR]

The article presents a study that validated an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors.