Setting the Standards for Life After Childhood Cancer
The Aflac Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta further improves the quality of life and medical outcomes for childhood and adolescent cancer survivors through its Cancer Survivor program. The program aims to improve continued health care and survivor quality of life.
The Cancer Survivor Outlook
One in approximately 640 young adults in the United States todayis a survivor of pediatric cancer,and two-thirds to three-quarters of those survivors suffer from some type of significant adverse health outcome. Many pediatric and adolescent cancers today have a 75 percent to 80 percent cure rate. A recent study published in the New England Journal of Medicine suggests that almost 62 percent of adult survivors of pediatric cancer 30 years post-diagnosis had significant chronic health conditions such as osteoporosis, growth failure, delayed puberty, infertility, musculoskeletal problems, and cognitive and psychosocial dysfunction. Approximately 28 percent had severe, disabling or life-threatening health conditions such as second malignancy, congestive heart failure, pulmonary lung fibrosis, and complications to the liver, kidney and gastrointestinal organ systems.
First Statewide Effort
In 2001, the AflacCancerCenter established the Cancer Survivor program with only one physician, a pediatric oncology nurse practitioner and a program coordinator. Today, the program boasts a staff of nine who follow nearly 1,000 childhood and adolescent cancer survivors in search of ways to improve their continued health care and quality of life.
“Our first goal was to get every survivor treated within the Aflac Cancer Center enrolled into our survivorship program – and our second goal was to develop the Georgia Pediatric Alliance for Cancer Survivors,” said Lillian Meacham, M.D., Medical Director for the Aflac Cancer Center Cancer Survivor program, Professor of Pediatrics with Emory University School of Medicine and recipient of the Kathelen V. Amos Children's Chair for Cancer Survivorship.
Many survivors do not know they could have a concise, portable summary of their cancer care that includes recommendations for long-term follow-up. This summary is called a Survivor Healthcare Plan.
“It’s a tool that can significantly aid in their future medical care,” Meacham said. “In fact, many survivors and their families do not even know there is a field of medicine, called Cancer Survivorship, focused explicitly on their treatment experience and what they’re now going through later in life”
In 2007, the AflacCancerCenter developed the Georgia Pediatric Alliance for Cancer Survivors (GPACS). Funded by the Georgia Cancer Coalition, GPACS is an independent nonprofit organization whose goals are to reduce the burden of cancer in Georgia. This was the first and only time anything like this has been done on a statewide basis in the United States. The goal of the collaborative effort is to eventually ensure that all pediatric cancer survivors receive the recommended survivor care and ultimately reduce the severity of resultant late effects of every childhood and adolescent cancer survivor in Georgia. Future plans include the utilization of a web-based system that would make Survivor Healthcare Plans always available to survivors, their families, and, with the survivor’s authorization, all physicians involved in their existing and future care. This is hoped to keep all healthcare providers informed and communicating about the survivor’s medical needs.
“Cancer survivor health care is a new and growing field of medicine,” said Ann Mertens, Ph.D., a childhood cancer epidemiologist who heads the research efforts for the Aflac Cancer Center Cancer Survivor program and a Professor of Pediatrics with EmoryUniversity.
“Regardless of age at diagnosis or disease type, people diagnosed with cancer are living longer,” she said. “Consequently treatment programs have evolved in the last five to 10 years to include a longer-term scope of research. We realized we needed to start looking at the whole picture, in fact the entire life span, of the pediatric cancer survivor to fully understand the nature of some of the late effects of cancer therapy such as infertility, cardiovascular disease and second malignancies.”
The Cancer Survivor Program and Innovation for Patients
The cancer survivor team does not diagnose or treat cancer. Instead, the team works in tandem with oncologists to diagnose late effects as early as possible. If adverse health conditions are found in survivors, the cancer survivor team facilitates getting those late effects of cancer therapy addressed by appropriate specialists. Together, the team has developed what they believe to be a vital tool to assist pediatricians and their young cancer survivors: the Survivor Healthcare Plan. Once a child has been off cancer therapy for two years, he is referred to the Aflac Cancer Center Cancer Survivor program, where a post-therapy health plan is generated to guide him for the rest of his life. The information culled from that tracking effort is recorded in the patient’s Survivor Healthcare Plan.
The team met with the pediatric oncology programs and cancer survivor programs in Augusta, Savannah, Macon and Columbus to form GPACS, a group that is committed to creating a Survivor Healthcare Plan for every pediatric cancer survivor in Georgia
A three-part, individualized profile, the plan includes a summary of the survivor’s cancer type and treatment history, a late effect risk profile and a recommended surveillance plan. To develop the risk profile and surveillance plan, the Survivor Healthcare Plan follows “gold standard” Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers from the Children’s Oncology Group. A Survivor Healthcare Plan becomes an increasingly important tool to facilitate communication between primary healthcare providers and subspecialist and to aid in the transfer of information as patient age and transition to adult providers. Since cancer survivor medicine is a new field of medicine, many oncologists, pediatricians and family practitioners also are unaware of the significant progress seen in the field. The AflacCancerCenter is committed to increasing awareness of cancer survivor medicine and its discoveries; and connecting Georgia’s pediatric and adolescent cancer survivors with the resources they need to live a quality life.
Currently under development is an Internet-accessible network of the state’s cancer survivors and their Survivor Healthcare Plans called SurvivorLink. This online network will allow cancer survivors and health care professionals throughout Georgia, and potentially beyond Georgia, access to survivors’ electronic survivorship records. This has the potential to allow health care providers to add medical information to the survivor’s health record, to update the problem list that is invaluable to the survivorship team at Children’s in tracking and understanding the late effects of cancer therapy.