Reshaping Adolescent and Young Adult Cancer Care in BC

Navigating cancer as an adolescent or young adult (AYA) is extra challenging and the difficulties are not nearly as well understood or supported when compared to children and older people. Cancer in AYAs, for example, is often diagnosed late due to the misperception that young people are always ‘healthy and strong’. In fact, diagnoses amongst AYAs (ages 15-39) have increased 79% since 1990 according to a study published by the British Medical Journal of Oncology while research funds focussing on AYA cancer rank at less than 0.5%. Further, cancer as an AYA often derails key life developments from completing education, to career building, to finding a life partner, having and caring for children, and/or caring for older relatives with little support along the way.

Momentum is now building to improve AYA cancer care and support and, thanks to assistance from the Rix Family Foundation, the Anew Research Collaborative, based at Royal Roads University in Victoria, is moving its long-term efforts to an important next level in BC. Anew was established in 2021 by RRU Professor, Cheryl Heykoop, who experienced cancer as an AYA and as a result changed her research focus to transforming AYA cancer care via participatory and creative means – all in partnership with AYAs and those who care for them. 

Anew’s collaborative research has significantly improved the understanding of AYA cancer including identifying and beginning to address the top priorities to improve care – customized counseling, better access to fertility preservation and information, and resources to meet the distinct care and support needs of AYAs. 

The Rix Family Foundation’s support is enabling the establishment of an AYA cancer working group composed of AYAs and care providers who, together with Anew, are laying the groundwork for a provincial AYA cancer care and support program in BC. To inform this effort, Anew is facilitating a series of participatory co-design sessions with AYAs including a focus on those who are often underserved and underrepresented in cancer care systems i.e., those from rural and remote communities, younger AYAs, those who are racialized, those who identify as LGBTQIA+, and/or those who are diagnosed with late stage or terminal cancer. The learnings from these sessions together with a coordinated strategy and commitment from the working group will help ensure the distinct care and support needs of AYAs are well addressed in BC moving forward. 

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