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

Abstract

Background: The Princess Margaret Cancer Centre (PM) established the adolescent and young adult (AYA) oncology program in 2014 to address the unique needs of AYA by delivering targeted, evidence-based care through a multidisciplinary team. Methods: We performed a retrospective analysis of patients who underwent a consultation with the PM AYA program from 2014 to 2020. The association between the health domain concerns reported and age at consultation, cancer diagnoses, and time since diagnosis was analyzed using chi-square test of independence in SPSS. Results: In our cohort of 1128 AYA, the median age at assessment was 28.2 years. The most common diagnoses were lymphoma ( n = 251, 22.2%), leukemia ( n = 207, 18.4%), and breast cancer ( n = 162, 14.4%). The most common concerns reported were related to fertility ( n = 882, 78.2%) and work/school ( n = 472, 41.8%). Fertility concerns were most common in 25–34 age group (443/540, 82.0%) and work-/school-related concerns were highest in 18–24 age group (191/355, 53.8%). Diagnoses significantly affect majority of concerns reported. Fertility concerns were most common in AYA consulted near diagnosis, while body image-, exercise-, and diet-related concerns were more frequently reported, while on active treatments. Conclusions: Supporting fertility concerns remains the cornerstone of any successful AYA program. Work-/school-related concerns deserve more elucidation and attention. We identified important patterns in the health-related concerns of AYA, especially as they relate to age, diagnoses, and time since diagnosis. This insight will guide us for improving patient-centered care delivery to AYA.

Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort

“…It is recognised that a cancer diagnosis at a key developmental time-point causes disruption for young people, including long-term and short-term impacts on their physical and mental well-being 2–4. Studies show a cancer diagnosis can cause prevalent biographical disruption to areas such as education, employment and the development of social and romantic relationships for this population 5. Alongside this, young people are likely to experience complications to fertility, sexuality and body image 6 7.…”

“…Alongside this, young people are likely to experience complications to fertility, sexuality and body image 6 7. Multiple periods of hospitalisation impacts important social milestones, potentially hindering young people’s ability to move towards independence and integrating with peers 5 6…”

“…[2][3][4] Studies show a cancer diagnosis can cause prevalent biographical disruption to areas such as education, employment and the development of social and romantic relationships for this population. 5 Alongside this, young people are likely to experience complications to fertility, sexuality and body image. 6 7 Multiple periods of hospitalisation impacts important social milestones, potentially hindering young people's ability to move towards independence and integrating with peers.…”