Unfortunately, there is a lack of awareness by young adult survivors of the problems that can emerge over time, so they may not realize that they need to get in to see their doctor and have that coordinated care.
—Anne C. Kirchoff, PhD, MPH
Athough the majority of the more than 69,000 adolescents and young adults (AYAs) diagnosed with cancer each year will survive their disease, many of them will experience interruptions in their education and a derailment in their career tract, curtailing their lifetime earning potential and reducing their access to health insurance. It is the lack of affordable health insurance and the inability to cover out-of-pocket costs associated with routine care that are keeping adolescents and young adults from seeking follow-up care once their cancer is in remission. This is according to a recent study by Anne C. Kirchoff, PhD, MPH, Assistant Professor of Pediatrics at the University of Utah School of Medicine; Investigator at the Huntsman Cancer Institute in the Cancer Control and Population Sciences Research Program; and lead author of the study published with colleagues recently in Cancer.1
The study analyzed self-reported data collected in 2009 by the Behavioral Risk Factor Surveillance System of more than 70,000 participants ranging in age from 20 to 39. Of those, 979 reported having a cancer diagnosis between the ages of 15 and 34 and were at least 5 years from diagnosis. The remaining 67,216 participants with no cancer history were used as controls. The study findings show that even though an almost equal percentage of survivors and controls (21% vs 23%, respectively) did not have health insurance, the adolescent and young adult survivors were 67% more likely to forgo follow-up care due to cost than their peers who have not had cancer.
The cancer survivors were mostly female, married, non-Hispanic whites and between the ages of 30 and 39 years. The most common cancer among the female survivors was cervical, while non-Hodgkin lymphoma was the most common cancer among the male survivors.
Although studies have shown that 80% of young adults with cancer survive at least 5 years after diagnosis,2 the chemotherapy, radiation, and surgical treatments they received put many at risk for developing late health effects, including secondary cancers, infertility, and cardiac problems, making follow-up medical care especially important.3 As many as 22% of survivors in the Cancer study did not have a medical provider, and 40% reported having no routine medical care in the past year.
Long-term Effects of Cancer
Although the study did not explore why the young adult cancer survivors with health insurance also often skipped follow-up medical visits, the difficulty of getting time off from work and the additional expense of paying for child care and transportation costs to and from the visits may also be factors in forgoing care, said Dr. Kirchhoff. Still others may just be unaware of the long-term health consequences of having cancer.
“Unfortunately, there is a lack of awareness by young adult survivors of the problems that can emerge over time, so they may not realize that they need to get in to see their doctor and have that coordinated care,” said Dr. Kirchhoff.
In addition, “young adult survivors may want to leave cancer behind and move on with their lives, so there is an attitude that serves as a barrier [to continuing care],” said Brad Zebrack, PhD, MSW, MPH, Associate Professor at the University of Michigan School of Social Work in Ann Arbor.
“But perhaps an even bigger barrier is the way our system of health care is designed. What’s missing is an organized and systematic transition from oncology care to primary care once the survivor is through with active cancer treatment and is in remission,” Dr. Zebrack added.
Last March, the National Comprehensive Cancer Network (NCCN) released new Clinical Practice Guidelines in Oncology for Adolescent and Young Adult Oncology,4 which provides specific algorithm-based care recommendations for 15- to 39- year-olds with cancer and includes a special emphasis on psychosocial evaluation and care.
“Our sense is that when physicians are treating patients with cancer, they are really looking at disease-specific information and guidelines for treatment. These updated NCCN guidelines were created as a way to complement care for the whole patient, including psychosocial care. The research is telling us that the experiences of having cancer in this age group are very different from pediatric and older adults with cancer,” said Dr. Zebrack, a member of the NCCN Adolescent and Young Adult Oncology Panel.
A survivorship care plan can provide young adult cancer survivors with an outline of treatments received and their potential long-term consequences, recommendations on prevention strategies for cancer recurrence or new cancers, and specific details about the timing and content of recommended follow-up care. Nevertheless, adolescents and young adults may require more personalized attention to make them adhere to the information provided in their survivorship plan.
“Giving [adolescent and young adults] a survivorship care plan is a step in the right direction, but there is no evidence to suggest that it actually results in overcoming the problems of adhering to follow-up care recommendations,” said Dr. Zebrack. “I think the reality of handing someone a booklet with a record of his suggested continuing care is that he goes home and shoves it in a drawer. A formalized system of follow-up care needs to be in place so that after the patient leaves the care of his oncologist, there is coordination with the patient’s primary care physician.”
To help oncologists and primary care physicians be better equipped to understand the unique challenges that young adult cancer survivors face and to educate those patients about their potential long-term health-care needs, 2 years ago ASCO and LIVESTRONG launched a new ASCO University® program called Focus Under Forty™.5 The program offers educational courses in the unique biology and care issues of survivors ranging in ages from 15 to 39.
“With nearly 13 million cancer survivors in the United States, primary care physicians are now more likely to see people with a history of cancer in their practice, so efforts to educate them about some of the long-term risks of exposure to chemotherapeutics and radiation will be helpful,” said Dr. Zebrack.
Financial Burden of Cancer
Some of the financial stumbling blocks keeping adolescents and young adults from maintaining long-term survivorship care may also be alleviated soon. A provision in the Patient Protection and Affordable Care Act requires health insurance plans that offer dependent coverage to make the coverage available until a child reaches the age of 26, so young adult survivors aged 26 and younger can now remain on their parents’ health insurance plans, making ongoing survivorship care more affordable.
Also, survivors with health problems that make them uninsurable in the private market can now access coverage through state-based, preexisting-condition insurance plans. Starting in 2014, under the Affordable Care Act, young adults will be able to buy affordable insurance through state-run health insurance exchanges, and low-income survivors may be able to access insurance coverage through the Medicaid expansion provision in the law.
“In some of my other research, we talked to younger cancer survivors who are still on their parents’ health insurance, and they said that they would not have had another option for insurance coverage if they weren’t able to do that,” said Dr. Kirchhoff. “The insurance exchanges in 2014 will help people with preexisting conditions, like young cancer survivors, get affordable insurance. The Affordable Care Act also prohibits lifetime dollar limits on health-care services, which is a big issue for high medical users who can reach spending caps quickly.”
Other Access Considerations
The Affordable Care Act does not entirely solve the problem of health-care accessibility for every adolescent and young adult survivor. According to the study reported in Cancer, AYA survivors may need additional health-care resources as they transition out of the oncology setting, such as information on community health centers and financial assistance programs, to improve their access to long-term survivorship care. Moreover, with the Supreme Court’s ruling last June—that individual states have the option of not expanding their Medicaid programs as outlined in the Affordable Care Act—the lowest-income adolescent and young adult survivors may be in the greatest jeopardy of not being able to meet their health-care financial needs.
“Unfortunately, the Supreme Court ruling will leave some very low-income survivors without access to health care. They may not be able to afford to buy insurance on the health insurance exchanges or be eligible for enrollment in Medicaid in their state, so there will still be limitations for those with the greatest health-care need,” said Dr. Kirchhoff. ■
Disclosure: Drs. Kirchhoff and Zebrack reported no potential conflicts of interest.
1. Kirchhoff AC, Lyles CR, Fluchel M, et al: Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer 118:5964-5972, 2012.
2. Ries LA, Eisener MP, Kosary CL: SEER cancer statistics review, 1975-2001. National Cancer Institute, 2004. Available at seer.cancer.gov. Accessed December 3, 2012.
3. Oeffinger KC, Hudson MM: Long-term complications following childhood and adolescent cancer. CA Cancer J Clin 54:208-236, 2004.
4. National Comprehensive Cancer Network. NCCN Guidelines Version 1.2012: Adolescent and young adult oncology. Available at www.nccn.org. Accessed December 3, 2012.
5. ASCO University: Focus under forty. Available at http://university.asco.org/focusunder40. Accessed December 3, 2012.