It has been a year since I started in my position as a pediatric, adolescent and young adult oncologist in Edmonton. The area of adolescent and young adult (AYA) oncology is a relatively new sub-specialty. It was born from concerns being raised that the cancer survival rates for the AYA population were not improving to the same degree that the survival rates for children and adults were improving. There are many questions still yet to be answered as to why this difference in survival exists. At the same time it was recognized that there was a need to better understand the personal challenges faced by AYAs that are also different from those of children and older adults.
Archie Bleyer, a pioneer in the field of AYA oncology suggests that some of the unique challenges facing AYAs and their caregivers include:
- Lower rates of enrollment to clinical trials often due to limited access to clinical trials to which they are eligible.
- Cancers diagnosed in AYAs may be named similar to cancers diagnosed in children or older adults; however, the disease biology and treatment tolerances of this age group has proven to be different.
- Reported poorer adherence to therapies compared to the older or younger patients.
- Adolescences and young adulthood is a time of ongoing psychosocial and developmental transition. These transitions, such as becoming an independent adult, choosing a vocation and starting a family can be challenging. When a diagnosis of cancer is made during this time, the challenges can be increased.
- Delay in diagnosis is common for AYA. Many people believe that cancer will not occur in the young, so symptoms of a cancer are often attributed to an injury or a benign condition.
In the last year, I have been involved in the care of several adolescents and young adults and have witnessed many of the challenges Bleyer described. In Alberta, regardless of age, expert cancer care is provided regardless of whether the AYA is manged through a pediatric or adult oncology program. Increasing the number of clinical trials that are available to the AYAs diagnosed with cancer as well as increasing the number of AYAs participating in clinical trials has become an international priority. In Alberta this is also a priority. Raising awareness of the unique needs of AYAs among all aspects of cancer care is another priority - from diagnosis to survivorship.
The Alberta Cancer Foundation recognizes the importance of understanding more about the experience of teenagers and young adults that are diagnosed with cancer. I am thankful to the Foundation for their support of the upcoming provincial workshop, AYAs with Cancer - Building a Roadmap Towards Improved Patient Outcomes. At this workshop, stakeholders of AYA cancer care including survivors, health care team members, administrators, funding agencies and advocacy groups will come together to both raise awareness of the unique aspects and needs of AYAs from the time of a diagnosis of cancer through survivorship and to start building provincial strategies to better needs these unique needs.
~By Guest Bogger & AYA oncologist Dr. Sarah McKillop