Adolescents
& Young Adults
Adolescents &
Young Adults

Adolescents and Young Adults

Adolescents and young adults are defined in the Australian Cancer Plan (the Plan) as people aged between 15–24 years of age; however, there is variability in the age ranges used in different settings. In Australia, one in eight people (12% of the whole population) are in this age group.[24][25]

Aboriginal and Torres Strait Islander people have a relatively younger age profile than the non-Indigenous population, with 19% of Aboriginal and Torres Strait Islander people aged 15–24 years, and more than half (52%) of all of Aboriginal and Torres Strait Islander people aged under 25 years.[25]

People identifying as belonging to diverse populations may identify across multiple priority population groups. This intersectionality can result in compounding impacts of social, cultural, commercial and environmental determinants of health on cancer experiences and outcomes.

Current state

Although cancer in young people is rare, it has a significant impact.[26] In 2023, it is estimated that 1,201 adolescents and young adults will be diagnosed with cancer, and 87 adolescents and young adults will die from cancer.[3] Between 2010 and 2014, the 5-year survival after a cancer diagnosis for adolescents and young adults was 89%, and cancer survivors have a 1.9 times greater risk of developing a second cancer.[26] Despite having a high survival rate, the significant effects of a cancer diagnosis and treatment leaves young cancer survivors living with a range of significant, life-changing late effects related to their cancer experience.[27]

Adolescents and young adults have specific factors that impact their cancer experience, including [27][28][29][30]:

  • their important developmental stage of life at diagnosis
  • the biology of cancers diagnosed in this age group
  • response to child or adult cancer treatments
  • the higher incidence of rare cancers with poorer outcomes
  • more limited access to clinical trials
  • fertility and equitable access to fertility preservation techniques
  • career and financial prospects
  • educational disruption.

In addition to the direct burden experienced by a diagnosis of cancer in an adolescent or young adult, when a cancer diagnosis occurs in the family, it is not uncommon for a young person to take on caring roles which can result in personal, social, and educational sacrifices. These circumstances increase their level of responsibility and can significantly impact their stage of development, increase psychological distress, and influence their vocational experiences.

Future state

The Plan aims to improve the experiences of cancer for adolescents and young adults.

This includes the integration of inclusive survivorship models of care. Such models of care include navigation; specialised education and training to healthcare providers to understand the current and future needs of people in this age group diagnosed with cancer; improving access to optimal cancer care; and improving accessibility, consistency, and comprehensiveness of national data sets.

Key Frameworks, Strategies, and Relevant Plans

Optimal Care Pathway for Adolescents and Young Adults with Cancer

Year: 2022
Author: Victorian Paediatric Integrated Cancer Service

The Optimal Care Pathway for Adolescents and Young Adults with Cancer was developed with the aim of improving outcomes and experiences of care for young people with cancer. This Optimal Care Pathway (OCP) was designed to complement the existing cancer-specific OCPs. The pathway is to support patients and carers, health systems, health professionals and services to encourage consistent optimal treatment and supportive care that is responsive to the needs of young people and their support networks.

https://www.canceraustralia.gov.au/optimal-cancer-care-pathways

Adolescent and Young Adults with Cancer: Model of Care for NSW/ACT

Year: 2019
Author: Cancer Institute NSW, NSW Government

The Adolescent and Young Adults with Cancer: Model of Care for NSW/ACT describes the optimal care and management for adolescent and young adults with cancer in New South Wales and the Australian Capital Territory.

https://www.cancer.nsw.gov.au/about-cancer/document-library/adolescents-and-young-adults-with-cancer-model-of-

AYA Vision 2033

Year: 2023
Author: Canteen

AYA Vision 2033 is a national strategic document that will guide the focus and action on priority issues for Australian AYA cancer care for the next 10 years. It will guide efforts to ensure adolescents and young adults and their families impacted by cancer have equitable access to world-leading diagnosis, treatment, and support from the diagnostic phase through acute care to long-term survivorship outcomes.

https://www.canteen.org.au/about-us/canteen-reports/aya-vision-2023

Implementation considerations

Maximising cancer prevention and early detection
Enhanced consumer experience
World class health systems for optimal care
Strong and dynamic foundations
Workforce to transform the delivery of cancer care
Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people

Stakeholder input

Stakeholders identified the need for greater access to targeted screening programs for adolescents and young people who are at higher risk of developing cancer due to genetic predisposition and other factors.

2 Years
5 Years

Actions

1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Translational research on the impact of education, early adolescent environment, family social support, and community on cancer outcomes.
  • Further research on the social and cultural factors associated with the uptake of smoking among adolescents and young adults.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening measures to include risk factors unique to adolescents and young people. This may include lifestyle behaviours and environmental factors and screening for genetic risk, including inherited and acquired genetic mutations.
-

2 Years

Actions

1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Translational research on the impact of education, early adolescent environment, family social support, and community on cancer outcomes.
  • Further research on the social and cultural factors associated with the uptake of smoking among adolescents and young adults.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening measures to include risk factors unique to adolescents and young people. This may include lifestyle behaviours and environmental factors and screening for genetic risk, including inherited and acquired genetic mutations.
-

5 Years

Actions

1.5.4
Develop a policy framework for genomics in cancer control across the cancer care continuum.
  • Policy framework to include direction on engagement with adolescents, young adults, and their families on the importance of genetic screening for predicting future disease status and susceptibility to certain cancers, such as breast and ovarian cancer.
-

Maximising cancer prevention and early detection

Stakeholder input

Stakeholders identified the need for greater access to targeted screening programs for adolescents and young people who are at higher risk of developing cancer due to genetic predisposition and other factors.

2 Years
5 Years

Actions

1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Translational research on the impact of education, early adolescent environment, family social support, and community on cancer outcomes.
  • Further research on the social and cultural factors associated with the uptake of smoking among adolescents and young adults.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening measures to include risk factors unique to adolescents and young people. This may include lifestyle behaviours and environmental factors and screening for genetic risk, including inherited and acquired genetic mutations.
-

2 Years

Actions

1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Translational research on the impact of education, early adolescent environment, family social support, and community on cancer outcomes.
  • Further research on the social and cultural factors associated with the uptake of smoking among adolescents and young adults.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening measures to include risk factors unique to adolescents and young people. This may include lifestyle behaviours and environmental factors and screening for genetic risk, including inherited and acquired genetic mutations.
-

5 Years

Actions

1.5.4
Develop a policy framework for genomics in cancer control across the cancer care continuum.
  • Policy framework to include direction on engagement with adolescents, young adults, and their families on the importance of genetic screening for predicting future disease status and susceptibility to certain cancers, such as breast and ovarian cancer.
-

Enhanced consumer experience

Stakeholder input

Stakeholders observed that adolescents and young adults have distinct challenges associated with a cancer diagnosis, including missing out on school and important social milestones. Limited access to clinical trials for adolescents and young adults, including personalised medicine, is considered to contribute to poorer outcomes.

Inequity exists in survival outcomes for different cancer types, with particular challenges for young people diagnosed with rarer cancers with lower survival rates. Access to multidisciplinary survivorship care was viewed as needed to help young people adapt to cancer recovery.

2 Years

Actions

2.2.1
Develop a national framework for and implement integrated multi-channel, multi-disciplined navigation models that ensure the right support at the right time for every consumer across the cancer continuum.
  • Integrated multi-channel, multi-disciplined navigation models to consider the role of families and carers in care navigation and the unique challenges associated with adolescent and young adult cancers. This could include specific adolescent and young adult cancer peer navigators or provision of support closer to home to minimise disruption to education and social activities.
-
2.2.2
Improve availability of co-designed, tailored information and care for consumers to improve health literacy and reduce cancer-related stigma.
  • Co-design tailored resources for adolescents and young adults experiencing cancer, and their carers.
  • Utilise digital tools such as mobile applications and social media in the delivery of information and care, as well as settings such as schools and youth health services.
-

2 Years

Actions

2.2.1
Develop a national framework for and implement integrated multi-channel, multi-disciplined navigation models that ensure the right support at the right time for every consumer across the cancer continuum.
  • Integrated multi-channel, multi-disciplined navigation models to consider the role of families and carers in care navigation and the unique challenges associated with adolescent and young adult cancers. This could include specific adolescent and young adult cancer peer navigators or provision of support closer to home to minimise disruption to education and social activities.
-
2.2.2
Improve availability of co-designed, tailored information and care for consumers to improve health literacy and reduce cancer-related stigma.
  • Co-design tailored resources for adolescents and young adults experiencing cancer, and their carers.
  • Utilise digital tools such as mobile applications and social media in the delivery of information and care, as well as settings such as schools and youth health services.
-

World class health systems for optimal care

Stakeholder input

Concerns were expressed around the safety and efficacy limits to conventional cytotoxic therapies and access to drugs was highlighted as a key challenge for paediatric and young adult oncology.

2 Years

Actions

3.2.1
Develop and implement a national framework that standardises the development, update, evaluation and uptake of Optimal Care Pathways (OCPs), including for priority population groups.
  • National framework that provides for the clinical and psychosocial needs of adolescents and young adults with cancer.
  • Tailored care plans for young adults diagnosed with cancer that minimise life disruptions and integrate the role of family, friends and education systems.
-
3.2.2
Develop a national framework for networked, distributed comprehensive cancer care, to facilitate provision of services as close as safely possible to where patients live. This will include the role of Comprehensive Cancer Centres to enhance patient outcomes, strengthen transparency and accountability, and drive continuous improvements for all patients across the network regardless of where the care is provided.
  • National framework for networked comprehensive cancer care designed for the clinical and psychosocial needs of adolescents and young adults with cancer, ensuring that comprehensive cancer care for young adults minimises life disruptions and integrates the role of family, friends and education systems.
-
3.2.3
Implement innovative, evidence-based and cost-effective models of care for people living with and beyond cancer.
  • Innovative, evidence-based models of care for adolescents and young adults that incorporate the views of the adolescents, young adults, and families, and that include education and social support services.
-
3.2.4
Develop and refine integrated care models to maximise access to high-quality, timely and evidence-based palliative and end-of-life care, including voluntary assisted dying.
  • Integrated care models that provide palliative care, advance care planning, and end-of-life care training for healthcare practitioners working with adolescents and young adults.
  • Integrated care models that provide access to palliative care, advance care planning, and end-of-life care information and resources tailored to adolescents and young adults engaging with palliative and end-of-life care, including for their carers and families.
-

2 Years

Actions

3.2.1
Develop and implement a national framework that standardises the development, update, evaluation and uptake of Optimal Care Pathways (OCPs), including for priority population groups.
  • National framework that provides for the clinical and psychosocial needs of adolescents and young adults with cancer.
  • Tailored care plans for young adults diagnosed with cancer that minimise life disruptions and integrate the role of family, friends and education systems.
-
3.2.2
Develop a national framework for networked, distributed comprehensive cancer care, to facilitate provision of services as close as safely possible to where patients live. This will include the role of Comprehensive Cancer Centres to enhance patient outcomes, strengthen transparency and accountability, and drive continuous improvements for all patients across the network regardless of where the care is provided.
  • National framework for networked comprehensive cancer care designed for the clinical and psychosocial needs of adolescents and young adults with cancer, ensuring that comprehensive cancer care for young adults minimises life disruptions and integrates the role of family, friends and education systems.
-
3.2.3
Implement innovative, evidence-based and cost-effective models of care for people living with and beyond cancer.
  • Innovative, evidence-based models of care for adolescents and young adults that incorporate the views of the adolescents, young adults, and families, and that include education and social support services.
-
3.2.4
Develop and refine integrated care models to maximise access to high-quality, timely and evidence-based palliative and end-of-life care, including voluntary assisted dying.
  • Integrated care models that provide palliative care, advance care planning, and end-of-life care training for healthcare practitioners working with adolescents and young adults.
  • Integrated care models that provide access to palliative care, advance care planning, and end-of-life care information and resources tailored to adolescents and young adults engaging with palliative and end-of-life care, including for their carers and families.
-

Strong and dynamic foundations

Stakeholder input

Stakeholders are concerned by the fertility risks of cancer treatments for adolescents and young adults and highlighted a need for increased research to better understand the relationship between cancer treatments and infertility.

There is also demand for a national data registry of newly diagnosed adolescent and young adult cancers to facilitate monitoring of cancer information and trends to promote improved outcomes.

2 Years

Actions

4.2.2
Ensure targeted and innovative research investment into areas of unmet and emerging need; and improve clinical trial design and equitable access.
  • Support ongoing research into onco-fertility treatments and care for adolescents and young adults.
  • Expand access to clinical trials.
  • Encourage industry support to commercialise treatments tailored specifically for cancers in adolescents and young adults.
-
4.2.3
Identify opportunities to improve equitable cancer care through the digital health ecosystem.
  • Digital health ecosystem designed to be user-friendly for adolescents and young adults, for example using tailored apps.
-

2 Years

Actions

4.2.2
Ensure targeted and innovative research investment into areas of unmet and emerging need; and improve clinical trial design and equitable access.
  • Support ongoing research into onco-fertility treatments and care for adolescents and young adults.
  • Expand access to clinical trials.
  • Encourage industry support to commercialise treatments tailored specifically for cancers in adolescents and young adults.
-
4.2.3
Identify opportunities to improve equitable cancer care through the digital health ecosystem.
  • Digital health ecosystem designed to be user-friendly for adolescents and young adults, for example using tailored apps.
-

Workforce to transform the delivery of cancer care

Stakeholder input

Adolescents and young adults may not feel directly involved in decision-making regarding their cancer care. Improving the skills of the cancer care workforce to communicate directly with adolescent and young adult cancer patients would support shared decision-making on cancer care and end-of-life choices.

Access to clinical trials needs a cultural shift, as trials and funding tend to only be available in adult or paediatric settings.

2 Years
5 Years

Actions

5.2.1
Identify current and emerging workforce undersupply in line with cancer workforce modelling and other national health workforce strategies, and initiate planning with the sector towards building future workforce capacity and capability.
  • Model the distribution of cancer care practitioners trained in treating adolescents and young adults, e.g., cancer specialists and researchers, and adolescent psychosocial services.
-
5.2.2
Build on existing capability of the primary care workforce to collaboratively and sustainably support the needs of consumers.
  • Extend the scope of practice of those working in adolescent and young adult medicine to provide supportive care, navigation assistance and survivorship care for adolescents and young adults with cancer.
-

2 Years

Actions

5.2.1
Identify current and emerging workforce undersupply in line with cancer workforce modelling and other national health workforce strategies, and initiate planning with the sector towards building future workforce capacity and capability.
  • Model the distribution of cancer care practitioners trained in treating adolescents and young adults, e.g., cancer specialists and researchers, and adolescent psychosocial services.
-
5.2.2
Build on existing capability of the primary care workforce to collaboratively and sustainably support the needs of consumers.
  • Extend the scope of practice of those working in adolescent and young adult medicine to provide supportive care, navigation assistance and survivorship care for adolescents and young adults with cancer.
-

5 Years

Actions

5.5.2
Assist the sector to support all cancer care practitioners to work at the top of their scope of practice, increase retention and ensure ongoing access to continuing professional development.
  • Increase cancer care workforce understanding of adolescents' and young adults' needs to be included and directly involved in decision-making about their care and end-of-life conversations.
-

Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people

The Australian Cancer Plan considers an intersectional and health equity approach for Aboriginal and Torres Strait Islander people. This is more than recognising the multiple backgrounds, experiences, and ways Aboriginal and Torres Strait Islander people identify. This approach addresses the way membership of multiple groups may impact people's health and wellbeing needs and ability to access care.

Implementation of each action should consider the compounding impacts of intersectionality across other priority population groups.

2 Years
5 Years

Actions

6.2.1
Embed Aboriginal and Torres Strait Islander voices in policymaking on cancer prevention, care delivery and standards through leadership, collaboration and co-design processes.
6.2.2
Strengthen collaboration with service providers, regulatory authorities and the Aboriginal and Torres Strait Islander cancer workforce to establish clear accountability for culturally safe care and compliance with national standards.
6.2.3
Establish and enhance collaborative partnerships with communities and Aboriginal and Torres Strait Islander-led organisations.

2 Years

Actions

6.2.1
Embed Aboriginal and Torres Strait Islander voices in policymaking on cancer prevention, care delivery and standards through leadership, collaboration and co-design processes.
6.2.2
Strengthen collaboration with service providers, regulatory authorities and the Aboriginal and Torres Strait Islander cancer workforce to establish clear accountability for culturally safe care and compliance with national standards.
6.2.3
Establish and enhance collaborative partnerships with communities and Aboriginal and Torres Strait Islander-led organisations.

5 Years

Actions

6.5.1
Establish ongoing place-based engagement with Aboriginal and Torres Strait Islander people to understand emerging needs across the cancer care continuum.
6.5.2
Implement strategies to embed culturally safe care within cancer-related services for Aboriginal and Torres Strait Islander people.

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