ADVOCACY FOR CHILDHOOD CANCER
Other than congenital disease, cancer remains the most common cause of death from illness among children, adolescents and young adults in the United States. Nevertheless, the impact of children’s cancer continues to be understated. The cancer incidence rate under age 15 appears to be increasing by 1% per year where as the cure rate is increasing by approximately 1.4% per year. Therefore, childhood cancer ranks third behind breast and lung cancer among all malignancies in the total number of person years of potential life at risk (550,000 person years) and is second only to breast cancer in the number of person years of potential life saved at nearly 400,000 person years. Conversely, the average loss of life when a child dies from cancer is staggering and represents greater than 100,000 person years annually. With a survival rate approaching 80% the magnitude is enormous since by the year 2000 there will be greater than 200,000 survivors of childhood cancer and they will represent 1% of the overall young work force in America.
The progress achieved and the ongoing effort can only be justified if the physical, emotional, and social quality of this survivorship is protected. Targeted strategies must be undertaken to improve cancer control, support high impact research and direct outcomes to include issues of survivorship, late effects of treatment, psychosocial outcomes and supportive care. This quality of life encompasses aspects beyond the medical issues and includes the individual, family, community and a lifetime of follow up. It also must consider an individual’s development, education, insurability, and employment as well as the risk of second malignancy and the potential health impact on the offspring of survivors. Finally, the emergence of managed care health systems that integrate financing and delivery of medical services must be carefully scrutinized to be sure that access to quality care through pediatric clinical trials will continue. Children and adolescents may represent only 1% of the cancer incidence but they represent 100% of the future.
The hospital networks within the Children’s Cancer Group and Pediatric Oncology Group treat 98% of the children ages birth to 4 years, 93% of those age’s 5 to 9 years, 84% of those ages 10 to 14 years, and 21% of those ages 15 to 19 years. The concept is that young patients should be treated only in "centers of excellence" because they can deliver intensive multidisciplinary care with experienced teams of oncologists, surgeons, and radiation therapists who provide the overall environment for maximum chance for cure and overall long-term quality of life. A serious threat to this effort was the perception that the treatment of childhood malignancies had been so successful that further work in the field was no longer required. However, many children are still dying of cancer and the long-term morbidity and societal impact remains high. It is well known that pediatric cancer care is more complex, more multiphasic, and of longer duration than the treatment of most adult patients. Potential for delayed and late adverse effects is greater and a lifetime of follow up is required to lessen the eventual impact on growth, education, employment, and social function.
Fortunately, the four pediatric cooperative groups have agreed to combine their efforts and create a single entity to be known as The Children’s Oncology Group so that virtually all children and young adults can be treated on high quality clinical trials. This will preserve the opportunity for oncology and surgery "centers of excellence" to remain directly involved in pediatric cancer care and enhance the spectacular cure rates in his young age group and better manage the issues of long-term survivorship, quality of life and societal impact. The first formal Children’s Oncology Group meeting is planned for March 2000 and the governing board will be assembled by March 2001 to launch the full spectrum of clinical activities.
SELECTED ARTICLES
For Questions & More Information