AYA resources for health professionals

• Psychosocial management of AYAs diagnosed with cancer: guidance for health professionals (COSA): Advice and practice points to assist in recognising and meeting the unique psychosocial needs of AYA with cancer
• AYA Oncology Psychosocial Care Manual (CanTeen): An overview and guide for best practice in psychosocial screening, assessment, and care plan development 

• Guidelines for fertility preservation for people with cancer (COSA): Summary of recommendations from COSA's latest oncofertility guidelines (May 2022)
• Fertility preservation for AYAs diagnosed with cancer: guidance for health professionals (COSA): Evidence-based recommendations and practice points to assist in discussion and management of fertility
• Fertility preservation in childhood and AYA cancer (The Lancet Oncology): A three-part series of guidelines and recommendations for fertility preservation in males and females and communication and ethical considerations 

Early detection of cancer in AYAs: guidance for general practitioners and primary healthcare providers (COSA): Evidence-based recommendations and practice points to assist with recognition, investigation, and referral for cancer in AYA

• AYA Oncology Psychosocial Survivorship Care Process (CanTeen): A partner manual to the above for the provision of age-appropriate psychosocial survivorship care
• Long-term follow-up guidelines for survivors of childhood, AYA cancers (Children’s Oncology Group): Risk-based, exposure-related clinical practice guidelines providing recommendations for screening and management of late effects in survivors of paediatric and AYA malignancies 

• Blueprint of care for teenagers and young adults with cancer, 2nd edition (Teenage Cancer Trust, UK): An evidence-informed and practice-based guide by topic to the provision of age-appropriate care
• NCCN Guidelines: Adolescent and young adult (AYA) oncology (National Comprehensive Cancer Network, USA): US-based clinical practice guidelines for AYA cancer screening, diagnosis, and management 

Resources summarising key issues or topics. 

1. Ferrari A, Stark D, Peccatori FA, Fern L, Laurence V, Gaspar N, et al. Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO Open. 2021 Apr;6(2):100096.
2. Animation: Key considerations in the care of young people with cancer (Victorian AYA Cancer Service & University of Melbourne)
3. Rajani S, Young AJ, McGoldrick DA, Pearce DL, Sharaf SM. The international charter of rights for young people with cancer. JAYAO. 2011 May;1(1):49-52. 

Publications relating to AYA cancer epidemiology in Australia and beyond, and the unique aspects of cancer biology in this population. 

1. Australian Institute of Health and Welfare. Cancer in adolescents and young adults in Australia 2023. Canberra: Australian Institute of Health and Welfare; 2023. 180 p. Cat. No. CAN 151.
2. Coccia PF. Overview of adolescent and young adult oncology. J Oncol Pract. 2019 May;15(5):235-37.
3. Tricoli JV, Bleyer A. Adolescent and young adult cancer biology. Cancer J. 2018 Nov/Dec;24(6):267-74.
4. Roder DM, Warr A, Patterson P, Allison KR. Australian adolescents, and young adults: trends in cancer incidence, mortality, and survival over three decades. J Adolesc Young Adult Oncol. 2018 Jun;7(3):326-38.
5. Trama A, Botta L, Steliarova-Foucher E. Cancer burden in adolescents and young adults: a review of epidemiological evidence. Cancer J. 2018 Nov/Dec;24(6):256-66.
6. Wen YF, Chen MX, Yin G, Lin R, Zhong YJ, Dong QQ, et al. The global, regional, and national burden of cancer among adolescents and young adults in 204 countries and territories, 1990-2019: a population-based study. J Hematol Oncol. 2021 Jun;14(1):89. 

An understanding of the AYA developmental life stage is foundational to quality care for this population. The papers below relate to the developmental context of adolescence and young adulthood, frameworks of relevance to AYA oncology and the provision of age-appropriate cancer care. 

See also this list of adolescent health resources.

1. Sawyer SM, Afifi RA, Bearinger LH, Blakemore SJ, Dick B, Ezeh AC, Patton GC. Adolescence: a foundation for future health. Lancet. 2012 Apr 28;379(9826):1630-40.
2. Docherty SL, Kayle M, Maslow GR, Santacroce SJ. The adolescent and young adult with cancer: a developmental life course perspective. Semin Oncol Nurs. 2015 Aug;31(3):186-96.
3. Sawyer SM, McNeil R, Thompson K, Orme LM, McCarthy M. Developmentally appropriate care for adolescents and young adults with cancer: how well is Australia doing? Support Care Cancer. 2019 May;27(5): 1783-92.
4. Sawyer SM, Ambresin AE, Bennett KE, Patton GC. A measurement framework for quality health care for adolescents in hospital. J Adolesc Health. 2014 Oct;55(4):484-90.
5. Crone EA, Dahl RE. Understanding adolescence as a period of social-affective engagement and goal flexibility. Nat Rev Neurosci. 2012 Sep;13(9):636-50.
6. Patton GC, Sawyer SM, Santelli JS, Ross DA, Afifi R, Allen NB et al. Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 2016 Jun 11;387(10036):2423-78.
7. Lea S, Taylor RM, Martins A, Fern LA, Whelan JS, Gibson F. Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study. Adolesc Health Med Ther. 2018 Oct 24;9:149-66.
8. Zebrack BJ. Psychological, social, and behavioural issues for young adults with cancer. Cancer. 2011 May 15;117(10 Suppl):2289-94.
9. D'Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer. 2011 May 15;117(10 Suppl):2329-34.
10. Palmer S, Thompson K, Thomas D. Section A5: Development issues faced by AYA cancer patients. In: A practice framework for working with 15-25 year old cancer patients treated within the adult health sector. Melbourne: ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service; 2008. 

Papers summarising and relating to the development of models of care for young people with cancer nationally and internationally. 

1. Patterson P, Allison KR, Bibby H, Thompson K, Lewin J, Briggs T, et al. The Australian Youth Cancer Service: developing and monitoring the activity of nationally coordinated adolescent and young adult cancer care. Cancers (Basel). 2021 May;13(11):2675.
2. Osborn M, Johnson R, Thompson K, Anazodo A, Albritton K, Ferrari A, et al. Models of care for adolescent and young adult cancer programs. Pediatr Blood Cancer. 2019 Dec;66(12):e27991.
3. Sironi G, Barr RD, Ferrari A. Models of care- there is more than one way to deliver. Cancer J. 2018 Nov/Dec;24(6):315-20. 

Whilst overall survival for AYA has improved over the years, survival gains for this population have lagged compared to those achieved in children and older adults. Young people with cancer subtypes also have inferior survival rates compared to children and older adults with the same diseases. The below papers focus on addressing one or more of the factors believed to contribute to the AYA ‘survival gap.’ 

1. Gibson F, Pearce S, Fern L, Martins A, Kelly D. Improving the identification of cancer in young people: a scoping review. Expert Rev Qual Life Cancer Care. 2017 Mar;2(2): 87-101.
2. Bleyer A. CAUTION! Consider cancer: common symptoms and signs for early detection of cancer in young adults. Semin Oncol. 2009 Jun;36(3):207-12.
3. Walczak A, Patterson P, Thomas D. Trials and tribulations: improving outcomes for adolescents and young adults with rare and low survival cancers. Med J Aust. 2018 Oct;209(8):330-32.
4. Bora K, White K. How can health professionals enhance interpersonal communication with adolescents and young adults to improve health care outcomes?: systematic literature review. Int J Adolesc Youth. 2018;23(2):198-218. 

Publications relating to AYA clinical trial access and enrolment in terms of barriers contributing to the AYA ‘survival gap’ and strategies for addressing them. 

1. Ellis J, Malalasekera VS, Allan C, Choong PF, Hansford JR, Hehir R, et al. Systems-level change to alleviate barriers to cancer clinical trial access for adolescents and young adults in Australia. J Adolesc Young Adult Oncol. 2022 Apr;11(2):173-180.
2. Siembida EJ, Loomans-Kropp HA, Trivedi N, O'Mara A, Sung L, Tami-Maury I, et al. Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention. Cancer. 2020 Mar;126(5):949-57.
3. Forcina V, Vakeesan B, Paulo C, Mitchell L, Bell JA, Tam S, et al. Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review. Adolesc Health Med Ther. 2018 Jun;9:87-94.
4. Fern LA, Whelan JS. Recruitment of adolescents and young adults to cancer clinical trials- international comparisons, barriers, and implications. Semin Oncol. 2010 Apr;37(2):e1-8. 

Published research relating to the care experiences of AYA with cancer and key areas of unmet need. 

1. Bibby H, White V, Thompson K, Anazodo A. What are the unmet needs and care experiences of adolescents and young adults with cancer? a systematic review. J Adolesc Young Adult Oncol. 2017 Mar;6(1):6-30.
2. White V, Skaczkowski G, Thompson K, Bibby H, Coory M, Pinkerton R, et al. Experiences of care of adolescents and young adults with cancer in Australia. J Adolesc Young Adult Oncol. 2018 Jun;7(3):315-25.
3. Sawyer SM, McNeil R, McCarthy M, Orme L, Thompson K, Drew S, et al. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Support Care Cancer. 2017 Jul;25(7):2229-2239.
4. McCarthy MC, McNeil R, Drew S, Orme L, Sawyer SM. Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer. 2018 May;26(5):1655-64.
5. Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, Orme LM, Conyers R, Phillips MB, Osborn M, Harrup R, Anazodo A. Do Australian adolescents' and young adults' experiences of cancer care influence their quality of life? Psychooncology. 2018 Mar;27(3):990-7.
6. Jones JM, Fitch M, Bongard J, Maganti M, Gupta A, D'Agostino N, et al. The needs and experiences of post-treatment adolescent and young adult cancer survivors. J Clin Med. 2020 May 13;9(5):1444. 

Resources relating to specific issues or aspects of clinical care for AYA (see above section on age-appropriate care for a broader take on this topic). 

1. Vandermorris A, Sampson L, Korenblum C. Promoting adherence in adolescents and young adults with cancer to optimise outcomes: a developmentally oriented narrative review. Pediatr Blood Cancer. 2020 Apr;67(4):e28128.
2. Robertson EG, Wakefield CE, Marshall KH, Sansom-Daly UM. Strategies to improve adherence to treatment in adolescents and young adults with cancer: a systematic review. Clin Oncol Adolesc Young Adults. 2015Jul;5:35-49.
3. Klein DA, Paradise SL, Landis CA. Screening and counselling adolescents and young adults: a framework for comprehensive care. Am Fam Physician. 2020 Feb;101(3):147-58. (the SSHADESS approach to psychosocial assessment, a strengths-based approach to HEEADSSS)
4. Smith LAM, Critoph DJ, Hatcher HM. How can health care professionals communicate effectively with adolescent and young adults who have completed cancer treatment? a systematic review. J Adolesc Young Adult Oncol. 2020 Jun;9(3):328-40. 

Resources relating specifically to AYA survivorship (others of relevance in sections above). 

1. Clinical Oncology Society of Australia Model of Survivorship Care Working Group. Model of survivorship care: critical components of cancer survivorship care in Australia position statement [Internet]. Sydney: Clinical Oncology Society of Australia; 2016 [cited 2023 Aug 30]. 25 p.
2. Fidler MM, Frobisher C, Hawkins MM, Nathan PC. Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatr Blood Cancer. 2019 Jun;66(6):e27668.
3. Perez GK, Salsman JM, Fladeboe K, Kirchhoff AC, Park ER, Rosenberg AR. Taboo topics in adolescent and young adult oncology: strategies for managing challenging but important conversations central to adolescent and young adult cancer survivorship. Am Soc Clin Oncol Educ Book. 2020 Mar;40:1-15.
4. Fitch MI, Nicoll I, Lockwood G, Chan RJ, Grundy P. Adolescent and young adult perspectives on challenges and improvements to cancer survivorship care: how are we doing? J Adolesc Young Adult Oncol. 2021 Aug;10(4):432-42.
5. Vardy JL, Chan RJ, Koczwara B, Lisy K, Cohn RJ, Joske D, et al. Clinical Oncology Society of Australia position statement on cancer survivorship care. Aust J Gen Pract. 2019 Dec;48(12):833-6.

Resources relating to palliative care for young people. 

1. Upshaw NC, Roche A, Gleditsch K, Connelly E, Wasilewski-Masker K, Brock KE. Palliative care considerations and practices for adolescents and young adults with cancer. Pediatr Blood Cancer. 2021;68:e2878.
2. Rosenberg AR, Wolfe J. Palliative care for adolescents and young adults with cancer. Clin Oncol Adol Young Adult. 2013;3:41-8.
3. Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents and young adults with cancer. Cancer. 2011 May;117(10 Suppl):2323-8.
4. Sansom-Daly UM, Wakefield CE, Patterson P, Cohn RJ, Rosenberg AR, Wiener L, et al. End-of-life communication needs for adolescents and young adults with cancer: recommendations for research and practice. J Adolesc Young Adult Oncol. 2020 Apr;9(2):157-65. 

Victorian and national services and support for young people with cancer. 

• Youth Cancer Services (YCS): Each Australian state has a multidisciplinary team specialising in the cancer treatment and care of young people aged 15-25 that may be contacted for advice and referrals (the Victorian AYA Cancer Service is the YCS for Victoria)
• CanTeen: Offers a range of services for young people with a cancer experience, including personalised education and career support, counselling, peer support and events
• RedKite: Education and financial grants and assistance for up to 12 months after treatment ends for young people aged 18 and under and their families
• Cancer Council Victoria: Offers a range of free services (for example, legal, financial and a cancer nurse telephone service), and maintains a broader cancer services guide for Victorians affected by cancer
• National Ovarian and Testicular Tissue Transport and Cryopreservation Service (NOTTCS): Enabling ovarian and testicular tissue cryopreservation for young people at risk of infertility
• Melbourne Sexual Health Centre: Sexual health resources and free youth-friendly services for Victorians
• Headspace: Youth-specific mental health resources and free youth-friendly in-person, phone, or online services
• Beyond Blue: Youth-specific mental health resources and free online and 24/7 telephone counselling support (to discuss any concerns big or small)
• Centrelink: A range of payments or other benefits may be available for young people and their carers
• Youthlaw Melbourne: Free community legal centre for Victorian youth under the age of 25 offering a range of services and resources