As discussed in Part I of this special feature on cancer survivorship, there are now more than 18 million cancer survivors in the United States, and that number is expected to grow to 26 million by 2040.1 However, most of those survivors—at least two-thirds—either cured or in remission or living with metastatic disease will have ongoing physical, psychological, and supportive care needs that are not well managed.2 And that figure includes more than 483,000 survivors, as of 2018, who were diagnosed with cancer when younger than age 20,3 and more than 633,000, as of 2020, adolescent and young adult (AYA) survivors, defined as those between the ages of 15 and 39,4 who likely will face a many decades-long survivorship phase, numerous long-term health risks, financial instability, and early mortality.
Although research shows that 5-year survivors of childhood cancer have a 30-year cumulative survival rate of 81.9%, a large study of 5-year survivors of cancer diagnosed during adolescence and young adulthood found that the 10-, 20-, and 25-year overall survival rates were 86%, 74%, and 68%, respectively, all of which were lower than the age-adjusted estimated survival rates of the general population in the United States.5 Adolescent and young adult survivors also have worse outcomes compared with pediatric and older adult cancer survivors.6
For these patients, there are significant risks for long-term health complications from chemotherapies and radiation therapy, including secondary malignancies and an acceleration of usual age-related comorbidities (such as cardiovascular disease). In addition, these young survivors also experience interruptions in their life plans, including education, career, and social relationships, as well physical impairment, infertility, fear of recurrence, and extraordinary financial hardship.
According to a recent report, commissioned by Teen Cancer America, the economic and human costs of cancer in AYAs are staggering: $23.5 billion overall, translating to $259,324 per person over his or her lifetime; and the total well-being cost (years of full health lost) is $96 billion, corresponding to a lifetime cost of $1 million per person. In addition, most of these costs are borne by AYA cancer survivors in the form of lost productivity, well-being, and loss of life.7
To learn more about the unique physical, emotional, and financial consequences of cancer on adolescent and young adult cancer survivors, The ASCO Post talked with Emily S. Tonorezos, MD, MPH, Director of the Office of Cancer Survivorship at the National Cancer Institute; and Susan K. Parsons, MD, MRP, Professor of Medicine and Pediatrics at Tufts University School of Medicine; Medical Director of the Reid R. Sacco AYA Cancer Program at Tufts Medical Center; and lead author of the report commissioned by Teen Cancer America.7
Recognizing the Significant Late Effects From Cancer
A Conversation With Emily S. Tonorezos, MD, MPH
Although considered a rare occurrence, cancer in individuals between the ages of 15 and 39 has risen by nearly 30% over the past 4 decades in the United States,8 reaching nearly 90,000 new cases each year and causing the deaths of more than 9,200 adolescents and young adults annually.9 Many of these survivors will experience late effects from their cancer and its treatment, including cardiac, endocrine, pulmonary, fertility, renal, cognitive, and sociodevelopmental impairments. Please talk about the significant morbidity and early mortality these survivors face.
Young women who are treated for cancer are at higher risk of premature menopause and other fertility side effects from treatment compared with children. Girls have a high ovarian reserve at birth, which gradually declines as they age. Cancer treatment can deplete those reserves. We also know that hearing loss, a common side effect from treatment, in both men and women, may also worsen with age. And these multiple late affects put AYAs at greater risk of developing mental health difficulties, including depression, anxiety, and posttraumatic stress.
In addition to the physical and psychosocial side effects, there are considerable life-altering events this age group experiences, including disruptions in their education, career, and romantic relationships...— Emily S. Tonorezos, MD, MPH
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In addition to the physical and psychosocial side effects, there are considerable life-altering events this age group experiences, including disruptions in education, career, and romantic relationships; sexual dysfunction; and loss of income over their lifetime.
One of the reasons these survivors have worse outcomes than their younger and older counterparts may be because of the lower participation in clinical trials compared with pediatric and older adult survivors. Also, financial instability probably impacts their ability to receive guideline-concordant care, to stay on treatment, or to be adherent to a follow-up monitoring schedule.
Furthermore, some cancers diagnosed in AYAs tend to be more aggressive. Cancers in this age group often go undetected because these survivors are not expecting to develop cancer and are not getting routine screenings like older adults, so that may delay diagnosis and result in later stage disease.
How can the health risks for these survivors be minimized? What are the barriers to accessing high-quality health care?
Unfortunately, there are a lot of barriers. What we found in our study on the long-term care for people treated for cancer during childhood and adolescence is there are knowledge gaps in both survivors and their health-care providers in terms of the risk of secondary cancers and other late effects and adherence to recommended surveillance for early detection.10 But we do not know a lot about all the challenges to accessing or delivering quality health care, and we clearly need more research in this area.
How can collaborations between oncology and other medical specialties (eg, cardiology, neurology, endocrinology, fertility, and sexual health) be established to minimize treatment side effects? What can be done to help survivors of childhood cancers and adolescent and young adult cancers transition to this type of coordinated care?
The goal would be to have 100% coordinated care among the various specialists. Previous research suggests that primary care providers (including family and internal medicine physicians) are willing to take care of survivors of childhood and adolescent and young adult cancers, but they have little knowledge of late effects and survivorship care resources, so they do not know where to turn if problems arise.
As a result, the default situation is that survivors are responsible for coordinating their own follow-up care. Survivors must bring their imaging, laboratory, or pathology results to their primary care provider, and this is intolerable. They are some of the challenges in taking good care of cancer survivors and we have to figure out how as a society we can do a better job.
Quantifying the Financial and Well-Being Costs of Cancer on AYAs
A Conversation With Susan K. Parsons, MD, MRP
In your cost of cancer in AYAs report, there are four broad types of costs from cancer—health system costs; productivity costs; other financial and funeral costs; and burden of disease costs—which totaled $119.54 billion, or $1.3 million per person in 2019 dollars. In addition to these categories of costs, there are also longer-term costs, such as the costs of fertility restoration, an increased risk of other life-threatening illnesses, behavioral and social needs, and impaired neurocognitive function.7 Please talk about the impact of the total cost of cancer on AYAs both during and after a cancer diagnosis.
There are two important comparators in considering the cost of cancer on AYAs. One is how it compares with AYAs without cancer. We do not have good population-level data to know the answer. But by all estimations, the financial impact is greater in AYA survivors than in their healthy counterparts, based on all the cost categories mentioned.
The big concern for AYAs is this financial burden does not appear to have an end. It appears there is not a ‘return to normal’ financially, and this is where we need as a society to figure out how to better support this population.— Susan K. Parsons, MD, MRP
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The second comparator that is also relevant is how the financial impact on AYA cancer survivors compares with that of older cancer survivors. For older adult survivors, most costs associated with cancer are from direct medical care. What is striking in the AYA population is how much of the cost of cancer is not borne by the medical system, but rather by the patient, family members, and employees through loss of productivity, disability, and death.
The big concern for AYAs is that this financial burden does not appear to have an end. It does not go away after chemotherapy is finished or the years of active surveillance after treatment, when life starts to return to normal. It appears there is not a “return to normal” financially, and this is where we need as a society to figure out how to better support this vulnerable population.
Consider that the median age for a cancer diagnosis is 66 and the average life expectancy in the United States is 77. Thus, older adults may have to endure the late effects of cancer and associated cost for a decade. That is not trivial, but it is a decade. For AYA survivors, the late effects of cancer, including the unrelenting financial burden, can last for several decades, and for some, it can be insurmountable.
In your study, were you able to isolate the financial costs of cancer on minority AYA survivors?
Not in the available population-level data we used. We do know, however, from other national surveys that the burden of cancer is higher in minority populations, but we do not have corresponding cost data at a population level. We need national cancer registries or repositories linked to health-care costs from which we can more globally understand the cost implications across different vulnerable subgroups of patients.
Please talk about the financial and psychological impact of cancer on the families of AYA survivors.
Cancer care often requires having a dependable caregiver who can help get patients to and through their appointments and treatment infusions and make sure they are cared for safely at home. Caregivers can be parents, siblings, friends, or spouses, who are forced to step up into a caregiver role. For the patient, this means there may be a loss of autonomy or independence. For the caregivers, it may mean they cannot continue to participate normally in their own career/employment because of their caregiving responsibilities. This is called the “spillover cost.” Depending on the cancer type and the sequelae of cancer and on some individual risk factors for the patient, that caregiving responsibility may go on for years.
Given the magnitude of cost and its duration, what concerns me about the financial issue is the terrible decisions survivors sometimes have to make when they are already facing financial uncertainty, such as the decision to delay or forgo care because of cost.
In addition to the financial costs of cancer on AYAs, according to the report, there is substantial loss of well-being, including an estimated 642,000 years of life lost because of premature mortality and healthy life years lost because of disability. In monetary terms, the total loss of well-being was estimated to be $96 billion in 2019 dollars. Please talk about the burden of cancer on well-being.
The report relied on methodology developed by the World Health Organization to estimate the human cost of cancer in terms of loss of life and loss of functioning to understand the burden of disease. Although the metric disability-adjusted life years (DALYs) is used commonly around the world, it has not been fully
embraced in the United States, nor is the monetization of loss of life or loss of functioning from morbidity, using methods, such as the value of a statistical life.
In human terms, cost incurred because of premature mortality from cancer is unmeasurable. However, having cancer and not dying but having residual morbidity may translate to diminished quality of life. The report used DALYs to consider both the years of life lost from premature death and the years of healthy life lost from disability, including diminution in the quality of life based on chronic health conditions. This can be in the form of health impairment, such as cardiovascular disease as well as lung, endocrine, and infertility issues, among others.
In summary, there are monetary costs of cancer, such as health-care and productivity costs, on AYAs, as well as nonmonetary costs, such as the human and opportunity costs associated with premature mortality and morbidity in this young population.
DISCLOSURE: Dr. Tonorezos reported no conflicts of interest. Dr. Parsons has served as a consultant to Seagen.
1. National Cancer Institute, Division of Cancer Control & Population Sciences: Statistics and graphs. Available at https://cancercontrol.cancer.gov/ocs/statistics. Accessed May 2, 2023.
2. Cancer care: Beyond survival. Editorial. Lancet 399:P1441, 2022.
3. National Cancer Institute: Childhood cancer survivor study: An overview. Available at www.cancer.gov/types/childhood-cancers/ccss. Accessed May 2, 2023.
4. National Cancer Institute: Study offers insights on health problems Among AYA cancer survivors. Available at www.cancer.gov/news-events/cancer-currents-blog/2020/aya-cancer-survivors-health-problems. Accessed May 2, 2023.
5. Berkman AM, Livingston JA, Merriman K, et al: Long-term survival among 5-year survivors of adolescent and young adult cancer. Cancer 126:3708-3718, 2020.
6. Baker KS, Syrjala KL: Long-term complications in adolescent and young adult leukemia survivors. Hematology Am Soc Hematol Educ Program 2018:146-153, 2018.
7. Parsons SK, Keegan THM, Kirchhoff AC, et al: Cost of cancer in adolescents and young adults in the United States: Results of the 2021 report by Deloitte Access Economics, commissioned by Teen Cancer America. J Clin Oncol. February 24, 2023 (early release online).
8. Scott AR, Stoltzfus KC, Tchelebi LT, et al: Trends in cancer incidence in US adolescents and young adults, 1973–2015. JAMA Netw Open 3:e2027738, 2020.
9. Miller KD, Fidler-Benaoudia M, Keegan TH, et al: Cancer statistics for adolescents and young adults, 2020, CA Cancer J Clin 70:443-459, 2020.
10. Tonorezos ES, Cohn RJ, Glaser AW, et al: Long-term care for people treated for cancer during childhood and adolescence. Lancet 399:1561-1572, 2022.
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