Development of age-appropriate care for AYA with cancer in Canada

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Breakthroughs in AYA cancer care are greatly aided by increased global collaboration – something more than 300 international professionals hope to achieve at the upcoming 3rd Global Adolescent and Young Adult Cancer Congress in Sydney from 4-6 December.

Highlighting the very real gaps in AYA cancer care, particularly in creating customised frameworks that suit each country’s individual circumstances, will help to drive progress in the medical, psychosocial and supporting care of young people with cancer.

It is well recognised in the literature that adolescents and young adults with cancer have unique needs related to their age, stage of life, and developmental maturity. Further, in several countries. it is recognised that deficiencies in the care provided to AYA with cancer result in long-term adverse health and social consequences, an increased burden on healthcare systems, and an overall loss of productivity. In Canada however, there are only a handful of specific programs designed to address these age-specific needs and most cancer programs have not identified AYA care as a priority issue.

The Canadian Partnership Against Cancer, CPAC, a federally funded organisation whose mandate is to improve cancer control for all Canadians, has supported the Adolescent and Young Adult Task Force which brought together advocates for AYA care from all domains of healthcare and published recommendations for standards of care. In 2016, CPAC determined that an organisation with formal connection to the cancer agencies and programs as well as policy makers at provincial and the federal level was now necessary to facilitate implementation of these and other recommendations.

To that end, we created the Adolescent and Young Adult National Network (AYANN) to serve as a pan-Canadian forum, comprised of representative leaders, including patient/family advisors, ministries, cancer agencies, clinicians, health system leaders, community organisations and relevant national organisations, to discuss, prioritise and facilitate action on matters of mutual priority related to Adolescents and Young Adults with cancer. Specifically, these efforts by CPAC and its partners are intended to measurably enhance the quality of the cancer experience and outcomes for adolescents and young adults with cancer.

As part of the CPAC’s Person Centered Perspective Initiative, the goals of the AYANN are to support patients’ and families’ engagement in decision making processes by contributing to the knowledge, communication and awareness of information that they need to make informed choices; to identify gaps and key opportunities for improvement in the delivery of AYA programs in Canada – and to develop strategies to address these gaps; and to develop a set of national outcome performance indicators and benchmarks.

Canada’s healthcare system is organised such that although the principles are federally mandated and certain principles such as equal access are guaranteed for all Canadians, the actual organisation and administration of healthcare is separate within each province. Thus, to advance the quality of care for any issue at the national level requires a collaborative partnership with all jurisdictions.

To rapidly engage partners across the country to stimulate the development, or in many cases, the initiation of AYA-specific healthcare, the AYANN has chosen, with the approval and active support of Canteen, to adopt and adapt the Australian Youth Cancer Framework. This recent, evidence-based and collaboratively developed framework was felt to most closely address our organisational structure and needs in Canada and to provide the right level of overarching strategies that we needed in Canada at this time to establish a national vision not just for the AYANN but for all cancer agencies, community-based organisations and healthcare disciplines.

After extensive discussion amongst the AYANN members to ‘Canadianise’ the framework, we are now widely consulting stakeholders across the country – from all related organisations, patients and families to ultimately land on a vision and framework that is shared, representative and hopefully one that drives a transformation in care for AYA with cancer in Canada.


Source: Excerpt from ‘Establishing AYA cancer as a national priority: the Canadian experience’, plenary on ‘AYA Priority Setting & Practice Innovation’ at the 3rd Global Adolescent & Young Adult Cancer Congress in Sydney from 4-6 December.

Links:

https://www.partnershipagainstcancer.ca/
https://www.canteen.org.au/youth-cancer/resources/aycf/
https://www.eiseverywhere.com/ehome/312967/welcome/

About the Network:

Objectives

The Network will:

  1. Identify priorities related to AYA with cancer that will benefit from collaborative action,
  2. Foster the development of high quality, organized adolescent and young adult care initiatives,
  3. Promote strategies to improve capacity and capability of healthcare providers in AYA,
  4. Influence the development of standardized metrics and performance reporting,
  5. Identify and where necessary create evidence and data sources to support quality improvement,
  6. Effectively communicate responses to the latest research, policy and practice changes and harmonize key messages with other partners and networks.

Membership

  • The Network shall make every reasonable effort to ensure that representatives from every province/ territory and cancer agency in Canada are included. Cancer Program leads and Deputy Ministers will be requested to identify an appropriate decision maker with responsibility for the care of AYA with cancer.
  • One member from government in each province/territory with responsibility for policy development in AYA cancer.
  • One member for each province/territory with responsibility for cancer programs
  • Five patient and family members representing a cross section of experiences with the cancer system
  • In addition to the members already described, members from relevant national professional organizations, national health information organizations, and patient advocacy organizations including C17, the Public Health Agency of Canada, the Canadian Cancer Society, Young Adult Cancer Canada (YACC), and others will also be invited to join the membership.
  • Membership shall be reviewed biennially.
  • Content experts, such as those from other international jurisdictions will be included by invitation.
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About Author

Paul Grundy

Professor Paul Grundy, Professor of Pediatrics and Oncology, Department of Pediatrics, University of Alberta, and Expert Lead, Pediatric, Adolescent and Young Adult Oncology, Canadian Partnership Against Cancer. His research career has focussed on Wilms tumour of the kidney, spanning the spectrum from basic molecular biology, to translational research to clinical trials.

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