Closing the Gap in Oncology Care for Adolescents and Young Adults

A Conversation With Emily S. Tonorezos, MD, MPH

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Emily S. Tonorezos, MD, MPH

Emily S. Tonorezos, MD, MPH

During her presentation “Adolescent and Young Adult Survivorship: What Do We Still Need to Know?” at the 2017 Cancer Survivorship Symposium: Advancing Care and Research, Emily S. Tonorezos, MD, MPH, a general internist in the Adult Long-Term Follow-Up Program at Memorial Sloan Kettering Cancer Center, described how gaps in research in adolescent and young adult (AYA) cancer survivors are impacting survival outcomes in this age group and hindering research in effective approaches for their care.

Differences in tumor biology and psychosocial/socioeconomic circumstances, as well as access to care, present unique challenges in the treatment of AYAs compared with younger or older adult cancer survivors, said Dr. Tonorezos. The failure to improve survival outcomes in this age population—5-year survival rates in AYAs have remained stagnant since 1975, and for individuals aged 30 to 34, survival rates have actually decreased1—may be related to their low participation in clinical trials and in their poorer tolerance of treatment compared with younger children.

There are myriad reasons AYAs are not enrolling in clinical studies, including a lack of availability in the oncology community setting and a too-high burden of participating in clinical trials, according to Dr. Tonorezos. The ASCO Post talked with Dr. -Tonorezos about how to increase AYA participation in clinical trials; overcome age-related differences in treatment-related toxicity; and support AYAs as they transition to survivorship care.

Improving Outcomes

Please talk about the causes of the gap in AYA oncology care and how they result in worse survival outcomes.

Research shows that most AYA patients receive their care in the community oncology setting, where clinical trials are often not available or offered, but there are also few trials designed for AYAs at major cancer centers. However, even when these young adults are offered a clinical trial, they often turn it down.

Not all patients want to be part of a scientific experiment, and they may have concerns that their individual needs will not be met.

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One consequence of that lack of participation by this age group is their treatment toxicities are not recorded and taken into account when drugs are being developed and tested. And the differences in AYA outcomes may be related to poorer tolerance of treatment. In addition, when AYA patients are not enrolled in a study, they are not followed by their oncologists over time, and there is no way for oncologists to know what long-term issues might arise due to their cancer and treatment. Furthermore, we lack data on what supportive care patients may need as they go through survivorship and what quality-of-life concerns they may have.

A study examining whether the lack of enrollment in a clinical trial may be an additional barrier to receiving long-term follow-up care found that patients enrolled in a therapeutic trial had significantly higher long-term follow-up care rates than did patients enrolled in biology studies alone.2

Another major concern for me is these patients are missing out on access to experimental therapies that could potentially be beneficial, and they definitely suffer as a result. And translational and basic research suffers, too, because scientists do not have access to biospecimens of AYAs, which hinders our understanding of potentially unique characteristics of their tumors.

Encouraging Participation in Clinical Trials

Why are AYAs reluctant to enroll in clinical trials?

There are several reasons for this reluctance. Some patients worry the study will present an undue burden because it may require them to have more frequent doctor visits and examinations. Also, not all patients want to be part of a scientific experiment, and they may have concerns that their individual needs will not be met. They may be concerned that the main priority is the research.

Since most patients are treated in the community setting, what can oncologists do to close the gap in AYA enrollment in clinical trials and encourage their young patients to participate?

There are efforts under way by the Children’s Oncology Group (COG) and others to increase enrollment of AYAs into National Cancer Institute–funded clinical trials throughout the country to improve outcomes. They include clinical trial designs that take into account age-related differences, such as pharmacokinetics/pharmacodynamics, acute and long-term treatment-related toxicities, supportive care measures, required study observations, and informed consent language and mechanisms.

Many AYA survivors are not receiving the risk-based care they need once they complete therapy.

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Multidisciplinary approaches by oncologists, nurses, social workers, and psychologists, among others, are also necessary to increase participation in trials through education, supporting patients’ psychosocial needs, and addressing barriers.

Some of the burden of the lack of trial participation has to fall on the cooperative groups running clinical studies, and they need to find ways to expand access so they are not limited to just a small number of institutions.

Focusing on Disease Rather Than Age

Why should oncologists and researchers focus on the disease rather than the age of these patients?

There are some cancers that spread across the pediatric and young adult oncology setting, for example, Hodgkin lymphoma, and we need to bridge the silos of care that exist in oncology and harmonize treatment approaches regardless of which setting the patient is treated in. For example, studies show that younger children have a greater tolerance for certain aspects of treatment compared with AYAs. Younger children may also have more accessibility to clinical trials, oncology specialists, and supportive care.

There is a movement under way to eliminate age restrictions on clinical trials. For example, at my institution we are expanding enrollment in pediatric trials to include adults, and that should help increase AYA participation in clinical studies.

Treatment-Related Intolerance

Can differences in treatment protocols for AYAs compared with younger patients affect their outcome?

Unfavorable disease cytogenetics or histology, especially in cancers like acute lymphoblastic leukemia, can lead to intensified treatment regimens, which may have a greater negative impact on AYAs than on younger children.

For example, studies show that younger children have a greater tolerance for treatment than AYAs. In secondary analyses of age-related differences in treatment-related toxicity (one in rhabdomysarcoma and one in a combined cohort of Wilms tumor and rhabdomyosarcoma), AYA patients had a significantly greater incidence of peripheral neuropathy than younger patients,3 so poorer survival has to be balanced with worsened toxicity.

As precision medicine is used more widely, we will be able to identify patients who are most susceptible to treatment side effects, such as peripheral neuropathy, and possibly modify regiments to reduce the risk of treatment toxicities, but it’s very, very tricky. Patients routinely ask me about treatment side effects and are often dismayed by their experiences, but I tell them they have to remember the primary goal: a cure. I can help my patients cope with the side effects of treatment, but if we haven’t gotten them to a cure, what have we accomplished?

Transitioning to Survivorship Care

Please talk about the importance of having a mechanism for transitioning from active therapy to survivorship care.

Unfortunately, many AYA survivors are not receiving the risk-based care they need once they complete therapy. A survey of COG institutions found that half of the respondents had no mechanism for transitioning care from pediatric to adult-focused providers and facilities.4 As a result, AYA survivors might go to a pediatric oncologist for survivorship care, if that’s where they received their primary care; an adult oncologist, even if they weren’t treated by an adult oncologist; a primary care -physician; or a specialized survivorship clinic or program if there is one in their community, but most likely they are not receiving survivorship care.

In addition to not knowing they need follow-up care to monitor for potential late effects from their treatment,5 AYAs might intentionally avoid care because of health insurance concerns and the medical costs of that care.

Providing all patients with a survivorship care plan that describes their cancer diagnosis and the treatment they received would give them some direction for the next steps, but many survivors need greater support, and it’s just not there on a systematic basis.

DISCLOSURE: Dr. Tonorezos reported no conflicts of interest.


1. Bleyer A, et al: Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975–2000. NIH pub no 06-5767. Bethesda, Maryland; National Cancer Institute; 2006. Available at Accessed May 2, 2018.

2. Hutchins KK, et al: Clinical trial enrollment and follow-up visit rates among survivors of childhood cancer. J Clin Oncol 35(5 suppl):22, 2017.

3. Freyer DR, et al: Children’s Oncology Group’s 2013 blueprint for research: Adolescent and young adult oncology. Pediatr Blood Cancer 60:1055-1058, 2013.

4. Eshelman-Kent D, et al: Cancer survivorship practices, services, and delivery. J Cancer Surviv 5:345-357, 2011.

5. Beaupin LM, et al: Uncharted territory: Life after cancer for young adults. J Clin Oncol 35(5 suppl):30, 2017.