Abstract
Simple SummaryA 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.
Highlights
Cancer in adolescents and young adults (AYAs; defined as 15–25 years in Australia) is relatively rare, with approximately 1200 young Australians newly diagnosed each year [1]
It is important to note that psychosocial screening and assessment will only benefit patients if services respond promptly and appropriately to the needs identified [77], and this was the case with the Youth Cancer Service (YCS): most newly diagnosed AYAs had their care discussed and a psychosocial care plan developed at a multidisciplinary team meeting, with this proportion increasing from 80% in 2016–17 to approximately 95% in 2018–19 and 2019–20
This paper demonstrates how the YCS facilitates Australian AYAs’ access to quality care that is comprehensive and ageappropriate— around access to clinical trials, oncofertility care, psychosocial assessment and support and survivorship care
Summary
Cancer in adolescents and young adults (AYAs; defined as 15–25 years in Australia) is relatively rare, with approximately 1200 young Australians newly diagnosed each year [1]. A diagnosis at this age presents unique issues, including prolonged pathways to diagnosis, treatment across paediatric and adult settings, disrupted developmental transitions and educational, vocational, social and relational challenges [2,3,4] These distinctive features necessitate tailoring services to the unique needs of the AYA population to provide quality, developmentally appropriate cancer care. This paper presents an account of how quality youth cancer care is conceptualised, monitored and improved in the Australian setting, using activity data collected from all state/territory youth cancer services to illustrate service evaluation processes; we focus on four priority areas for AYA cancer care (clinical trial enrolment, oncofertility, psychosocial care and survivorship). This is the most comprehensive dataset on Australian youth cancer care to date, covering details of the care received by all AYAs across the nation who have accessed support through the Youth Cancer Services between 2016 and 2020
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