Childhood Cancer Survivors Require Special Care
Research into the long term effects of cancer is currently underway to help guide the care of childhood cancer survivors.
By Daniel A. Mulrooney, M.D., M.S.
K. Scott Baker, MD, MS
Joseph P. Neglia, MD, MPH
Ann C. Mertens, Ph.D.
Kirsten K. Ness, Ph.D.
Recent medical advances in childhood cancer treatment are impressive. Survival rates vary depending upon the cancer and stage of disease, but in many cases overall five-year survival approaches 80 percent. Increased survival has increased the need to understand the long-term effects of cancer therapy and how to provide ongoing care for former childhood cancer patients.
Today, nearly 270,000 individuals in the United States are survivors of a childhood or adolescent malignancy. Estimates predict that by the year 2010, more than one in 250 Americans between the ages of 20 and 45 will be childhood cancer survivors.
Increased Survival Requires Understanding Long-Term Effects
Long-term effects of cancer therapy may include:
- school- or work-related issues
- Endocrine abnormalities
- Early heart disease
- Pulmonary disease
- Obesity
- Second cancers
These effects may not be recognized for many years. Appropriate monitoring and screening should be part of every primary care visit for survivors of childhood and adolescent cancer.
Gradually, more U.S. medical centers are offering specialized clinics to assist childhood cancer survivors and their physicians with their unique health care needs. Evaluations in long-term follow-up clinic visits can help survivors understand their therapy, identify risk factors, and better communicate health care needs to their primary provider.
Researching the Special Needs of Childhood Cancer Survivors
At the University of Minnesota, the Children’s Cancer Research Fund Long-Term Follow-Up Clinic (LTFU) provides consultation for childhood cancer survivors and health care providers. The clinic sees cancer survivors regardless of age or where they received their initial treatment. Survivors are provided with:
- a detailed review,
- a summary of their therapy,
- screening for late complications,
- specialty referral if necessary, and
- assessments by a neuropsychologist and social worker.
Survivors are enrolled in the clinic’s database, so late effects can be followed over time.
Multiple Studies Investigate Long Term Effects of Childhood Cancer
The LTFU Clinic also conducts ongoing research. Research is aimed at
- improved understanding of the late effects of cancer therapy, and
- minimizing impact on the health, wellness, and quality of life.
Studies currently in progress include:
- Metabolic Syndrome - Drs. Scott Baker and Julia Steinberger were each recently awarded NIH grants totaling more than $5 million dollars. Their studies will evaluate childhood cancer and blood and marrow transplant survivors for signs of metabolic syndrome, which can point to early diabetes and cardiovascular disease. Over the next five years, more than 500 survivors will come to the University to participate in the study.
- Heart Disease - Dr. Daniel Mulrooney was selected as a Clinical Research Scholar through the National Institutes of Health K12 program. He will investigate markers of cardiovascular inflammation in childhood cancer survivors that may suggest premature atherosclerosis and heart disease. Learnings from these studies will be directly applied to patient care in the Children’s Cancer Research Fund LTFU Clinic.
- Quality of Life for Brain Tumor Survivors - Dr. Kirsten Ness received funding from the American Cancer Society to improve the lives of survivors of pediatric brain tumors. Dr. Ness, a physical therapist and epidemiologist by training, will evaluate physical ability, disability, and quality of life in young adults previously treated for a brain tumor. This study will help those caring for childhood cancer survivors develop strategies to decrease functional loss and restore performance. Survivors will benefit from an improved understanding of the treatments that place them at risk for disabilities and decreased activity.
Funds from Children’s Cancer Research Fund provided critical preliminary data that helped to make grant submissions successful. Research can be directly translated into improved care for the growing number of patients formerly treated for childhood cancer.