Articles written and contributed by CHOC Children's pediatric experts.
Bridging the Adolescents and Young Adults Cancer Gap
By Leonard Sender, MD
link to article
Aug 11, 2008 - 4:17:41 PM
According to the American Cancer Society, five-year cancer survival rates over the past 30 years have improved greatly for children under 18 -- from less than 50 percent surviving before the 1970s to a nearly 80 percent survival rate today. However, patients 15-39 do not show the same increase in survival rates, especially when treated at cancer centers traditionally focused on adult oncology. Several research studies, conducted in Western Europe and the United States over the last eight years, have consistently demonstrated improved outcomes for AYA patients when they are treated according to more traditional “pediatric” protocols versus adult protocols.
Cancer Differences by Age and Gender
The types of cancers that typically occur in 15-39-year-olds are distinctly different than those found in older patients. According to the International Classification of Diseases (ICD), primary cancers diagnosed in AYAs include thyroid, melanoma, connective tissue, Hodgkin lymphoma and germ cell/gonadal. For an oncology community generally focused on treating patients with a median age of 68, these cancer types look very different than cancers they normally see.
In looking at cancers by gender and age set, additional differences appear. According to the California Cancer Registry, women ages 15-19 are diagnosed most often with lymphoma, followed by endocrine, skin, brain/CNS and genital cancers. Women 20-29 present a higher incidence of genital, breast and skin cancers, while the incidence of brain/CNS cancers and lymphoma drop and endocrine cancer continues to be the most diagnosed malignancy. Only in the 30-39 age range does breast cancer begin to dominate as the top cancer for women.
For men, the distribution of cancer types follows slightly different trends. In men 15-29, lymphoma is the cancer most often diagnosed, followed by leukemia, genital and brain/CNS cancers. As men age, they show marked increase in male genital cancers, followed by lymphoma, leukemia and brain/CNS cancers rounding out the top diagnoses. In the 30-39 age group, skin cancer becomes the prominent diagnosis, followed by lymphoma and male genital cancers.
Disturbing Age-Related Outcome Gaps
According to U.S. SEER (Surveillance Epidemiology and End Results) data from 1993-1997, five-year cancer survival rates are lower in AYAs than in children and older adults in virtually all cancer types, including breast, colorectal, soft tissue, non-Hodgkin lymphoma and leukemia. In addition, AYAs have lower survival rates than pediatric cancer rates for Hodgkin lymphoma, cervix, renal, ovarian, brain, Ewing sarcoma and hepatic cancers. Only thyroid, testis and melanoma cancers showed improved survival rates in AYAs over children and older adults.
What Are the Problems – and How Can We Solve Them?
Putting AYA patients into a dedicated children's facility or pediatric cancer treatment program creates problems not only for the treating institution but also the patient. These patients often feel their unique “non-medical” issues cannot be addressed in a children's setting -- from physical and sexual maturation, to acquiring skills needed to carry out adult roles, to gaining autonomy from parents.
As a result, AYA patients often fall into a treatment and support gap that is not addressed by traditional oncology programs. Patients are deemed “too old” for children's facilities, where more aggressive treatment might improve their survival outcome, and adult facilities that may provide more needed psycho-social support may not result in the best treatment outcomes.
To address the AYA cancer gap, Children's Hospital of Orange County (CHOC) and UC Irvine Medical Center have created a unique partnership resulting in one of the first coordinated AYA programs in the nation. Patients at the lower end of the AYA spectrum (15-21) are treated at CHOC, while older AYA patients (22-39) are treated at UC Irvine. Patients can progress seamlessly from one facility to the other, often with the same treating oncologists.
When CHOC and UCI began working together in 2006, the creation of a joint AYA task force brought together the expertise of a large group of scientists who have earned international reputations for their work in the prevention, diagnosis and treatment of cancer. The group's efforts culminated with a unique research study known as Kids, Adolescents and Young Adults Cancer (KAYAC) Research Program, which works to advance research aimed at curing, preventing and better treating pediatric and AYA cancer patients.
By combining the strengths of pediatric and adult cancer treatment specialties and sharing data and designing support programs specifically aimed at AYAs, the vision is to improve survival outcomes and ultimately design a better survivorship experience by helping this young population address cancer on their terms.
Leonard Sender, MD is director of oncology at Children’s Hospital of Orange County (CHOC), medical director of the CHOC Cancer Institute and director of clinical oncology services at UC Irvine Medical Center. In addition to his work with the joint AYA program at CHOC and UCI, Dr. Sender recently launched SeventyK.org, an online advocacy campaign created to address issues faced by the AYA population, by introducing an “AYA Bill of Rights” specifically reflecting the needs of these patients. For more information on the AYA Program or SeventyK, please visit www.choc.org.