After the Cancer Experience: Research

The rapidly growing population of childhood cancer survivors presents a new challenge to the medical community. Long-term survivors face serious health risks for the remainder of their lives, including risks associated with the chemotherapy, radiation therapy or surgery used to cure them.  

To help better understand those risks and develop more effective screening tests, ACE became a founding member of the NCI-funded Childhood Cancer Survivor Study in 1994. Since then, the program has helped build a database of more than 26,000 childhood cancer survivors. 

 

  • Ongoing Research

     

    • Participating in the NIH-funded Childhood Cancer Survivor Study (CCSS) since inception, including analysis on the health status of adult survivors of childhood cancer, preventive health behaviors, obesity, diabetes and hypertension who were treated for their childhood cancer from 1970 to 1986. Phase II of the study, evaluating the health status of patients treated with more modern therapy (1987 – 1999), is currently underway
    • Four-year National Cancer Institute-funded ALLIFE Study funded to 1. determine the prevalence of cardiovascular risk in young adult survivors of childhood leukemia, and 2. test an intervention intended to increase levels of physical activity.
    • Children's Oncology Group (COG) study: Key Adverse Events after Childhood Cancer.
    • The COG study: Health-Related Outcomes for Hodgkin Disease Survivors.
    • Upcoming study: Evaluation of a computer-based education program to educate childhood cancer survivors.
    • ACE Program Evaluation Survey: Results of this study were presented at the Texas Academy of Family Physicians 59th Annual Session and Scientific Assembly in July 2008.

  • Featured Article

     

    Twenty-five-year follow-up among survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study
    Blood, 15 June 2008

    Full text (PDF)

    This article describes the incidence of mortality and chronic medical conditions of survivors of acute lymphoblastic leukemia (ALL). The article also explores the marriage, employment, education and health insurance status of these ALL survivors. Participants in this study were from the Childhood Cancer Survivor Study who received treatment from Jan. 1, 1970 through Dec. 31, 1986. When evaluating the information presented in this article, it is important to note that these participants received their treatment between 22 and 38 years ago and complications (morbidity) have decreased with each subsequent treatment era and with more modern therapies. Also, with the exception of death and subsequent cancers, the medical complications are all self-reported and not verified by medical record, so there can be some underreporting or overreporting of medical complications. Another important distinction that should be understood when reading this article is that some participants in this study received cranial irradiation, which was more common for central nervous system protection in earlier treatment eras, while other participants did not receive cranial irradiation. It is universally accepted that radiation increases the risk of future complications. The authors state that "it is very important to emphasize that the overwhelming majority (92%) of survivors who did not relapse or receive RT (radiation) did not report any severe CMC (chronic medical condition)."

  • ACE Publications

     

    Chronic Health Conditions in Adult Survivors of Childhood Cancer
    New EnglandJournal of Medicine, Oct. 12, 2006

    Full text (PDF)

    Long-term Complications Following Childhood and Adolescent Cancer: Foundations for Providing Risk-based Health Care for Survivors
    CA: A Cancer Journal for Clinicians, July/August 2004

    Full text (PDF)

    Obesity in Pediatric Oncology
    Pediatric Blood Cancer, April 6, 2005

    Full text (PDF)

    Cardiovascular Risk Factors in Young Adult Survivors of Childhood Acute Lymphoblastic Leukemia
    Journal of Pediatric Hematology/Oncology, Oct. 7, 2001

    Full text (PDF)

    Utilization of Special Education Services and Educational Attainment among Long-Term Survivors of Childhood Cancer
    Cancer, Feb. 15, 2003

    Full text (PDF)