SALT LAKE CITY-- Children with cancer have a good chance of surviving the disease--today more than 80 percent survive because of advances in treatment and care. However, recent studies have shown that some of these more than 420,000 U.S. childhood cancer survivors face future health-related challenges as they become adults such as a second cancer diagnosis, cardiac failure, or other severe medical complications.
These types of major health issues can impact a survivor's ability to work, but it has been unclear if these patients are able to access federal assistance programs. A new study, from Huntsman Cancer Institute (HCI) at the University of Utah, shows for the first time that childhood cancer survivors, diagnosed between 1970 and 1986, are more than five times as likely to have been enrolled on a federal social security disability assistance program as compared to individuals without a cancer history.
"The long-term impact of cancer can affect other issues besides health outcomes," said Anne Kirchhoff, Ph.D., a Huntsman Cancer Institute investigator and the lead author on the study published in the Journal of the National Cancer Institute (JNCI). "We need to do a better job of helping people function throughout their lives, not just when they're finishing their cancer therapy."
Kirchhoff said the study identified survivor socio-demographic and treatment characteristics that were associated with a higher rate of enrollment in federal support programs. "Survivors that were younger at diagnosis, age 4 or under, were about seven times more likely to be on SSI [Supplemental Security Income] than we see with survivors that were diagnosed in their adolescence." In addition, she said SSI enrollment, among survivors, was more likely for females and for those with a history of cranial radiation treatment.
The study looked at health insurance surveys completed in 2011-2012 by a random sample of 698 childhood cancer survivors that were diagnosed between the ages of 0-20--today they range in age from their 20s to early 60s. The patients are part of a National Cancer Institute initiative, called the Childhood Cancer Survivor Study, which has followed more than 14,000 children and adolescents since 1994 who were diagnosed with cancer and survived for at least five years after diagnosis. A comparison group of 210 siblings without cancer also responded to the survey and were used as a control for the study.
Kirchhoff said they looked at current or former enrollment on two federal disability programs: SSI for people with limited income who have no prior work history, and Social Security Disability Insurance (SSDI), which pays disability benefits to adults ages 18 years and older who have worked and paid social security taxes.
They found that a total of 13.5 percent of survivors had ever been enrolled on SSI, while 10 percent had ever been enrolled on SSDI. This was significantly higher than was found for the comparison group, 2.6 percent on SSI and 5.4 percent on SSDI. Survivors were also currently enrolled in SSI more frequently than the U.S. population, 7.3 percent versus 2.5 percent, respectively.
Kirchhoff said over the years, research on this survivor population is causing hospitals to rethink how to better care for survivors. "There's really a growing strategy to support survivors in the long term," said Kirchhoff. "For example, here at Huntsman Cancer Institute we have a pediatric cancer late-effects clinic which helps manage issues that might come up with childhood cancer survivors in the long term, including health-management support, health-behavior support, and access to providers to help them with other issues."
Echo L. Warner, from Huntsman Cancer Institute, was a co-author on this study. Other co-authors include Helen M. Parsons, University of Texas San Antonio, TX; Karen Kuhlthau, Karen Donelan, and Elyse R. Park, Massachusetts General Hospital, MA; Wendy Leisenring, Fred Hutchinson Cancer Research Center, WA; Gregory T. Armstrong and Leslie L. Robison, St. Jude Children's Research Hospital, TN; and Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, NY.
This work was supported by the Livestrong Foundation and the National Cancer Institute (U24 CA 55727, Armstrong GT, principal investigator). Dr. Kirchhoff is supported by the Huntsman Cancer Institute, including from the Cancer Center Support Grant P30 CA42014, and Huntsman Cancer Foundation.
About Huntsman Cancer Institute at the University of Utah
Huntsman Cancer Institute (HCI) is one of the world's top academic research and cancer treatment centers. HCI manages the Utah Population Database - the largest genetic database in the world, with more than 16 million records linked to genealogies, health records, and vital statistics. Using this data, HCI researchers have identified cancer-causing genes, including the genes responsible for melanoma, colon and breast cancer, and paraganglioma. HCI is a member of the National Comprehensive Cancer Network (a 26-member alliance of the world's leading cancer centers) and is a National Cancer Institute-Designated Cancer Center. HCI treats patients with all forms of cancer and operates several high-risk clinics that focus on melanoma and breast, colon, and pancreas cancers. The HCI Cancer Learning Center for patient and public education contains one of the nation's largest collections of cancer-related publications. The institute is named after Jon M. Huntsman, Sr., a Utah philanthropist, industrialist, and cancer survivor.