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

doi:10.3390/cancers13112675

. 2021 May 28;13(11):2675.

doi: 10.3390/cancers13112675.

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

Pandora Patterson^{1

2}, Kimberley R Allison¹, Helen Bibby¹, Kate Thompson^{3

4

5}, Jeremy Lewin^{3

4

6

7}, Taia Briggs^{8

9}, Rick Walker^{10

11

12

13}, Michael Osborn^{14

15}, Meg Plaster^{16

17}, Allan Hayward¹⁴, Roslyn Henney¹⁰, Shannyn George¹⁶, Dominic Keuskamp¹, Antoinette Anazodo^{8

9

18

19}

Affiliations

¹ Research, Evaluation and Policy Unit, CanTeen, Sydney, NSW 2042, Australia.
² Faculty of Medicine and Health, University of Sydney, Sydney, NSW 2006, Australia.
³ Victoria/Tasmania Youth Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁴ ONTrac at PeterMac Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁵ Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, VIC 3010, Australia.
⁶ Department of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁷ Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC 3010, Australia.
⁸ New South Wales/Australian Capital Territory Youth Cancer Service, Sydney, NSW 2031, Australia.
⁹ Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Sydney, NSW 2031, Australia.
¹⁰ Queensland Youth Cancer Service, Queensland Children's Hospital, Brisbane, QLD 4101, Australia.
¹¹ Oncology Services Group, Children's Health Queensland, Brisbane, QLD 4000, Australia.
¹² Princess Alexandra Hospital, Brisbane, QLD 4102, Australia.
¹³ School of Medicine, University of Queensland, Brisbane, QLD 4072, Australia.
¹⁴ South Australia/Northern Territory Youth Cancer Service, Royal Adelaide Hospital, Adelaide, SA 5000, Australia.
¹⁵ Department of Haematology and Oncology, Women's and Children's Hospital, Adelaide, SA 5006, Australia.
¹⁶ Western Australia Youth Cancer Service, Sir Charles Gairdner Hospital, Nedlands, WA 6009, Australia.
¹⁷ Sir Charles Gairdner Hospital, Nedlands, WA 6009, Australia.
¹⁸ School of Women and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia.
¹⁹ Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW 2031, Australia.

PMID: 34071622
PMCID: PMC8198716
DOI: 10.3390/cancers13112675

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

Pandora Patterson et al. Cancers (Basel). 2021.

. 2021 May 28;13(11):2675.

doi: 10.3390/cancers13112675.

Authors

Affiliations

¹ Research, Evaluation and Policy Unit, CanTeen, Sydney, NSW 2042, Australia.
² Faculty of Medicine and Health, University of Sydney, Sydney, NSW 2006, Australia.
³ Victoria/Tasmania Youth Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁴ ONTrac at PeterMac Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁵ Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, VIC 3010, Australia.
⁶ Department of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.
⁷ Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC 3010, Australia.
⁸ New South Wales/Australian Capital Territory Youth Cancer Service, Sydney, NSW 2031, Australia.
⁹ Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Sydney, NSW 2031, Australia.
¹⁰ Queensland Youth Cancer Service, Queensland Children's Hospital, Brisbane, QLD 4101, Australia.
¹¹ Oncology Services Group, Children's Health Queensland, Brisbane, QLD 4000, Australia.
¹² Princess Alexandra Hospital, Brisbane, QLD 4102, Australia.
¹³ School of Medicine, University of Queensland, Brisbane, QLD 4072, Australia.
¹⁴ South Australia/Northern Territory Youth Cancer Service, Royal Adelaide Hospital, Adelaide, SA 5000, Australia.
¹⁵ Department of Haematology and Oncology, Women's and Children's Hospital, Adelaide, SA 5006, Australia.
¹⁶ Western Australia Youth Cancer Service, Sir Charles Gairdner Hospital, Nedlands, WA 6009, Australia.
¹⁷ Sir Charles Gairdner Hospital, Nedlands, WA 6009, Australia.
¹⁸ School of Women and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia.
¹⁹ Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW 2031, Australia.

PMID: 34071622
PMCID: PMC8198716
DOI: 10.3390/cancers13112675

Abstract

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.

Keywords: activity data; adolescent and young adult; clinical trial participation; oncofertility; psychosocial; service delivery; survivorship.

PubMed Disclaimer

Conflict of interest statement

All authors are affiliated with Canteen Australia and/or the Australian Youth Cancer Services, whose activity is the subject of the paper. The authors have no other conflicts of interest to disclose.

Figures

**Figure 1**
YCS activity data on medical clinical trial enrolment, 2016–17 to 2019–20.

**Figure 2**
YCS activity data on oncofertility care, 2016–17 to 2019–20.

**Figure 3**
YCS activity data on psychosocial care, 2016–17 to 2019–20.

**Figure 4**
YCS activity data on survivorship care, 2016–17 to 2019–2020.

See this image and copyright information in PMC

Cited by

Future of Treatment of Adolescents and Young Adults With ALL: A Vision for Collaboration and Equity.
Newman H, Hunger SP. Newman H, et al. J Clin Oncol. 2024 Feb 20;42(6):665-674. doi: 10.1200/JCO.23.01351. Epub 2023 Oct 27. J Clin Oncol. 2024. PMID: 37890130 Free PMC article. Review.
Patterns and Predictors of Healthcare Use among Adolescent and Young Adult Cancer Survivors versus a Community Comparison Group.
Sansom-Daly UM, Wakefield CE, Signorelli C, Donoghoe MW, Anazodo A, Sawyer SM, Osborn M, Viney R, Daniell N, Faasse K, Cohn RJ. Sansom-Daly UM, et al. Cancers (Basel). 2021 Oct 20;13(21):5270. doi: 10.3390/cancers13215270. Cancers (Basel). 2021. PMID: 34771435 Free PMC article.
The Clinical Utility of the Adolescent and Young Adult Psycho-Oncology Screening Tool (AYA-POST): Perspectives of AYA Cancer Patients and Healthcare Professionals.
Patterson P, McDonald FEJ, Allison KR, Bibby H, Osborn M, Matthews K, Sansom-Daly UM, Thompson K, Plaster M, Anazodo A. Patterson P, et al. Front Psychol. 2022 May 6;13:872830. doi: 10.3389/fpsyg.2022.872830. eCollection 2022. Front Psychol. 2022. PMID: 35602702 Free PMC article.
Looking Back to Move Forward: Lessons Learned from a Successful, Sustainable, Replicable Model of Adolescent and Young Adult Program of a Tertiary Cancer Care Center.
Pitch N, Stefaniuk S, MacMillan M, Catsburg J, Gupta AA, Vora T. Pitch N, et al. J Adolesc Young Adult Oncol. 2022 Apr;11(2):181-188. doi: 10.1089/jayao.2021.0156. Epub 2022 Jan 7. J Adolesc Young Adult Oncol. 2022. PMID: 35007440 Free PMC article.
Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned.
Scott I, Oberoi S. Scott I, et al. Curr Oncol. 2024 Apr 26;31(5):2420-2426. doi: 10.3390/curroncol31050181. Curr Oncol. 2024. PMID: 38785462 Free PMC article.

See all "Cited by" articles

References

1. Australian Institute of Health and Welfare . Australian Cancer Incidence and Mortality Books: Annual Mean 2007-Canberra. Australian Institute of Health and Welfare; Canberra, Australia: 2015.
1. Warner E.L., Kent E.E., Trevino K.M., Parsons H.M., Zebrack B.J., Kirchhoff A.C. Social well-being among adolescents and young adults with cancer: A systematic review. Cancer. 2016;122:1029–1037. doi: 10.1002/cncr.29866. - DOI - PMC - PubMed
1. Kim B., Patterson P., White K. Developmental considerations of young people with cancer transitioning to adulthood. Eur. J. Cancer Care. 2018;27:e12836. doi: 10.1111/ecc.12836. - DOI - PubMed
1. Fardell J.E., Wakefield C.E., Patterson P., Lum A., Cohn R.J., Pini S., Sansom-Daly U.M. Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research. J. Adolesc. Young Adult Oncol. 2018;7:143–147. doi: 10.1089/jayao.2017.0086. - DOI - PubMed
1. Osborn M., Little C., Bowering S., Orme L. Youth Cancer Services in Australia: Development and Implementation. International Perspectives on AYAO, Part, J. Adolesc. Young Adult Oncol. 2013;2:118–124. doi: 10.1089/jayao.2012.0032. - DOI - PubMed

LinkOut - more resources

Full Text Sources

[1] Australian Institute of Health and Welfare . Australian Cancer Incidence and Mortality Books: Annual Mean 2007-Canberra. Australian Institute of Health and Welfare; Canberra, Australia: 2015.

[2] Australian Institute of Health and Welfare . Australian Cancer Incidence and Mortality Books: Annual Mean 2007-Canberra. Australian Institute of Health and Welfare; Canberra, Australia: 2015.

[3] Warner E.L., Kent E.E., Trevino K.M., Parsons H.M., Zebrack B.J., Kirchhoff A.C. Social well-being among adolescents and young adults with cancer: A systematic review. Cancer. 2016;122:1029–1037. doi: 10.1002/cncr.29866. - DOI - PMC - PubMed

[4] Warner E.L., Kent E.E., Trevino K.M., Parsons H.M., Zebrack B.J., Kirchhoff A.C. Social well-being among adolescents and young adults with cancer: A systematic review. Cancer. 2016;122:1029–1037. doi: 10.1002/cncr.29866. - DOI - PMC - PubMed

[5] Kim B., Patterson P., White K. Developmental considerations of young people with cancer transitioning to adulthood. Eur. J. Cancer Care. 2018;27:e12836. doi: 10.1111/ecc.12836. - DOI - PubMed

[6] Kim B., Patterson P., White K. Developmental considerations of young people with cancer transitioning to adulthood. Eur. J. Cancer Care. 2018;27:e12836. doi: 10.1111/ecc.12836. - DOI - PubMed

[7] Fardell J.E., Wakefield C.E., Patterson P., Lum A., Cohn R.J., Pini S., Sansom-Daly U.M. Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research. J. Adolesc. Young Adult Oncol. 2018;7:143–147. doi: 10.1089/jayao.2017.0086. - DOI - PubMed

[8] Fardell J.E., Wakefield C.E., Patterson P., Lum A., Cohn R.J., Pini S., Sansom-Daly U.M. Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research. J. Adolesc. Young Adult Oncol. 2018;7:143–147. doi: 10.1089/jayao.2017.0086. - DOI - PubMed

[9] Osborn M., Little C., Bowering S., Orme L. Youth Cancer Services in Australia: Development and Implementation. International Perspectives on AYAO, Part, J. Adolesc. Young Adult Oncol. 2013;2:118–124. doi: 10.1089/jayao.2012.0032. - DOI - PubMed

[10] Osborn M., Little C., Bowering S., Orme L. Youth Cancer Services in Australia: Development and Implementation. International Perspectives on AYAO, Part, J. Adolesc. Young Adult Oncol. 2013;2:118–124. doi: 10.1089/jayao.2012.0032. - DOI - PubMed

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

Similar articles

Cited by

References

LinkOut - more resources

Full Text Sources