By Julia Killen, Nurse Practitioner
Every day, more and more children battle cancer – and beat it. They are survivors, but their journey of health and healing after cancer continues as they are at higher risk of additional health problems later in life.
Currently the overall survival rate for pediatric cancer is 80 percent. The majority of these young survivors will experience life-long health issues: 66 percent will develop at least one chronic health problem, with about 25-40 percent being a severe or life-threatening condition. As we’ve learned more about the late effects of childhood cancer treatment, growing importance has been placed on the need for long-term follow-up and treatment plans these young cancer survivors.
Cancer is complex and can be hard to understand. Adolescent and young adult cancer survivors often don’t have complete knowledge of potential late effects from treatment – only 35 percent of survivors thought their past treatments could cause a serious health problem in the future. Without much understanding or research until recently, even doctors haven’t been fully unaware of the potential late effects of childhood cancer treatment.
One significant study shows that long-term survivors are at risk for developing adverse outcomes, including early mortality, second malignancies and organ dysfunction – such as endocrine, cardiac, pulmonary, gonadal, neurological and orthopedic problems. These patients can experience impaired growth and development, fertility problems, neurocognitive delay and an overall decline in quality of life. Establishing a medical home early that can provide “accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective care” can help these young survivors later in life.
Individual care plans that include treatment summaries help minimize severe or life-threatening side effects for pediatric cancer survivors – less than 20 percent of survivors from the Childhood Cancer Survivor Study report receiving a treatment summary. The Children’s Oncology Group has established standardized guidelines for recommended follow up for the potential late effects. Maintaining a relationship with a healthcare provider who understands these guidelines as well as the long-term complications for treatment and how they can arise throughout life is an essential part of childhood cancer survivors’ continued journey of health and healing.
Julia Killen, RN, MSN, CPNP-AC, is a nurse practitioner at Mission Pediatric Hematology/Oncology.
- Bhatia, S., & Meadows, A.T. (2005). Long-term follow-up of childhood cancer survivors: future directions for clinical care and research, Pediatric Blood & Cancer, 46, 143-148.
- Friedman, D.L., Freyer, D.R., & Levitt, G.A. (2005). Models of care for survivors of childhood cancer, Pediatric Blood & Cancer, 46, 159-168).
- Kaden-Lottick, N.S., Robinson, L.L., Gurney, J.G., et. al (2002). Childhood cancer survivors’ knowledge about their past diagnosis and treatment childhood cancer survivor study, JAMA, 287, 1832-1839.
- Nathan, P.C., et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv 2013 Mar 8.
- Nathan, P.C., et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology, 2008 Sept 20; 26 (27) 4401-4409.