By Peter Shaw, MD, Director, Adolescent and Young Adult (AYA) Oncology Program, Division of Pediatric Hematology/Oncology, Children’s Hospital of Pittsburgh of UPMC
The ages of 15 to 25 are a difficult time in anyone’s life: you are physically and emotionally still maturing, in the midst of school or working, and most importantly, just trying to define who you are as an individual and where you fit in with your peers. If you throw a new diagnosis of cancer into the mix of what adolescents and young adults, or AYAs, have to deal with, one can only imagine the impact it can have at such a point in a young person’s evolution into adulthood. Everything gets put on hold: your school, extracurricular activities, your job, and even some of your important relationships. It is like someone hit the “pause” button on your life just when you were getting some momentum.
Every year, 70,000 new adolescents and young adults (AYAs) in the United States are diagnosed with cancer. These patients aged 15 to 39 have had stagnant cure rates while older and younger cancer patients have seen overall improvement. In 2006, I was invited to a national meeting in Denver which was called to address this issue and brought pediatric and medical oncologists together with other experts to examine this problem. The AYA Progress Review Group (as the meeting was called) concluded that there were several reasons these patients are not seeing the same successes as older and younger cancer patients:
- Less access to cutting-edge clinical trials
- Less access to insurance
- Lower suspicion of cancer by health care providers leading to delays
- Referral patterns, meaning physicians without the proper expertise/best therapies are treating these patients:
For example it has been established internationally that for some diseases such as acute lymphoblastic leukemia, AYA patients have significantly improved survival at five years when treated on pediatric regimens at pediatric centers.
- Poor compliance with care
If you are interested, the report is available free at the following link: http://planning.cancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf
We also know that AYA oncology patients are not children and not truly anchored in adulthood, so they cannot be treated as either bigger children or younger versions of older cancer patients. That is why I started an AYA Oncology Program at Children’s Hospital of Pittsburgh of UPMC not long after the 2006 PRG was held — to address these issues and improve the care AYA cancer patients receive in western Pennsylvania. We realize that patients in this age range require a specialized team approach to treat their cancer, which is why we work with medical oncologists, surgeons, radiation oncologists, and radiologists to make sure we are offering our patients the most up-to-date therapy. As a member of the Children’s Oncology Group (COG), we offer clinical trials from the largest pediatric cooperative group in the world, with many of them accepting patients as old as 30.
We also realize that we have to treat the whole person for his or her special needs, so we have social workers, an embedded psychologist, and fertility specialists at Magee-Womens Hospital of UPMC as part of our team. We also have Child Life specialists who give these patients age-appropriate electronic media to pass the time in the hospital and clinic as well planning social outings specifically for our AYA patients, such as our annual Seven Spring ski weekend.
We are proud of what we have built, yet seek to make it better and better so we can close the survival gap for AYA cancer patients and care for them as the unique patients they are!