The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

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.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences. Queensland is a vast state with a widely dispersed population; coordination of cancer services for young people across this landscape presents unique challenges. The Queensland YCS (QYCS) work in a consultative partnership model with primary treating teams, across both pediatric and adult tertiary cancer services. Understanding how cancer services approach challenges and service development can provide guidance for other developing services. In this article, we describe the goals and development of QYCS and review the outcomes achieved in the service to date. We reviewed referral data and retrieved statewide clinical activity from the web-based data system. We compared these data with cancer registry data to identify disparities and areas for service development. While the service has achieved notable outcomes, challenges remain. These include recruitment of appropriately skilled and trained health professionals for this newly developing area of oncology. In addition, there is an ongoing need to advocate for this relatively small patient group, and to promote awareness and understanding of the need for AYA-specific services. With the dispersed population and concentration of services in metropolitan Brisbane, identifying and testing new innovative models, including telehealth, to reach all AYA diagnosed with cancer regardless of location of care are priorities.

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

BACKGROUND: Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. METHODS: A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. RESULTS: One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. CONCLUSION: To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

Improvements in Clinical Practice for Fertility Preservation Among Young Cancer Patients: Results from Bundled Interventions.

AIMS: The consequences of cancer and treatment on fertility can be a continuing source of distress for adolescents and young adults. The study aims were to assess the effects of bundled interventions on clinical practice concerning fertility in young people aged 14-25 years with cancer. METHODS: Bundled interventions, including development of quality indicators, resources, and targeted education, were introduced during 2015 across five cancer centers. Data before interventions (2012-2014) were compared with data prospectively collected during 2015-2016. Relative risks (RR) with 95% confidence intervals (CI) were calculated to assess effects of interventions. RESULTS: Compared with the pre-intervention cohort (n = 260), the post-intervention cohort (n = 216) was 1.47 times more likely to have documented discussion of risk of infertility (95% CI 1.12-1.63, p = <0.001). Similarly, documented referral to fertility specialists was more likely in the post-intervention cohort (RR 1.53, 95% CI 1.26-1.87, p = <0.001) as was documented fertility preservation outcomes (RR 2.56, 95% CI 1.91-3.44, p = <0.001). These differences were significant across age, gender, and diseases. Females had greater improvement in documented risk of infertility discussion between cohorts (RR 1.70, 95% CI 1.19-2.08, p = <0.001). Among diseases, the greatest improvements were seen in those with brain cancers (RR 2.15, 95% CI 1.28-3.62, p = 0.004) and soft tissue sarcoma (RR 2.60, 95% CI 1.17-5.78, p = 0.02). CONCLUSIONS: We have demonstrated the effects of bundled interventions to improve clinical practice associated with fertility preservation in young people with cancer. Interventions were successful for reducing disparities identified in the pre-intervention cohort associated with gender and certain diseases. Assessment of the quality of patient care is not possible without accurate, consistent documentation.

'Working from the inside': an infrastructure for the continuing development of nurses' professional clinical practice.

AIM: This paper describes how the nursing executive of a tertiary referral facility revisited their management structures and responsibilities to create a new, sustainable infrastructure that supports research and education at the core of nursing practice and not at the periphery. BACKGROUND: Nursing executive and senior management groups are charged with the ultimate responsibility of ensuring the highest possible quality nursing care within their facility. In the current health care climate the aim for best practice conflates with evidence-based practice that can be notoriously difficult to achieve due to the many barriers to integrating research findings into practice. KEY ISSUES: Research and education activities have been established as fundamental to core business under a simple evidence-based practice model. CONCLUSION: The value of a synthesis between the clinical areas with the nursing education and research division has been recognized to better achieve the goal of improved services.