What Do We Still Need to Know About Adolescent and Young Adult Survivorship?

As a result of the differences in biology, access to care, and psychosocial and socioeconomic circumstances, adolescent and young adult (AYA) patients with cancer face distinct challenges compared with their adult counterparts. At the 2017 Cancer Survivorship Symposium, Emily S. Tonorezos, MD, MPH, General Internist, Adult Long-Term Follow-Up Program, Memorial Sloan Kettering Cancer Center, New York, NY, discussed gaps in research and treatment in this vulnerable patient population, while proposing solutions to improve AYA survivorship care.

Failure to improve survival outcomes in the AYA population may be related to low participation in clinical trials.

“Patients in this age-group aren’t getting on clinical trials, and we are seeing a real impact in terms of outcome,” she reported.

It is not only survival outcomes that are affected. Whether because of lack of awareness, access, or acceptance, the AYA gap hinders research.

“If patients aren’t in a clinical trial or being followed by their oncologist over time, then we don’t have access to their data when it comes to survivorship questions,” said Dr Tonorezos, who noted that enrolling patients in a therapeutic clinical trial leads to significantly better long-term follow-up.

“Getting a patient enrolled in a clinical trial is not just about treating the cancer. It’s also about keeping them engaged so they can be watched for late effects and contribute to late-effects research,” she added.

Differences in AYA treatment outcomes may also relate to poorer tolerance of treatment in AYA patients compared with in young children. Several studies have shown that young children tolerate treatment better than patients in their teens or young-adult years. In a secondary analysis of rhabdomyosarcoma and Wilms’ tumor clinical trials, AYA patients had more vincristine-induced peripheral neuropathy than younger patients.

“If you’re developing treatment-limiting peripheral neuropathy, your vincristine is held or the dose is reduced. That’s what happens to AYA patients who are more heavily affected by toxicity,” said Dr Tonorezos.

In addition, studies have shown that treatment-related osteonecrosis, mucositis, hyperglycemia, and hyperbilirubinemia were more common in AYA patients than in younger patients.

“Female patients going through puberty are at especially high risk for osteonecrosis. That’s a known toxicity, where you can identify a high-risk group because of this age of development,” she said.

Transitioning to survivorship care is another major concern, because many AYA survivors fail to receive adequate risk-based care.

“Adherence to recommended second cancer and cardiac testing has been low. A survey of Children’s Oncology Group institutions revealed that half of respondents had no mechanism for transition of care from pediatric to adult-focused providers and facilities,” said Dr Tonorezos.

A lack of survivor-focused, risk-based preventive care is associated with concerns about medical cost and health insurance status, but minorities, and in particular male patients, are unlikely to receive routine preventive care, she said.

“Calling this a vulnerable population is just the beginning,” she emphasized.

A Call to Action

Providers should identify toxicities that are higher in AYA patients than in other patients and develop strategies to mitigate them, Dr Tonorezos said.

“The goal is to continue to treat the patient with high-intensity treatment and support them through the care that they need,” she added.

However, the biggest change needed may be a shift in perspective.

“Oncology is a disease-based specialty. We need to take AYA away from a topic that is age-based and start thinking about the individual diseases found in this population. If we can bring together experts of specific cancers, no matter what age-group they’re used to treating, we can accomplish good, disease-based analyses,” said Dr Tonorezos.

“Supporting the STAR [Childhood Cancer Survivorship, Treatment, Access, and Research] Act is a very important part of this work. This legislation will make a huge impact in what we can do for survivorship research,” she added.

In addition, “There needs to be more conversation between adult oncologists and pediatric oncologists with regard to enrollment [in] clinical trials,” she said.

“Keeping in mind that AYA [patients] are more susceptible to some toxicities, we should generate follow-up guidelines for survivors of AYA cancer or improve the existing ones, and we should start testing interventions in AYA, including psychosocial, medical, occupational, and educational interventions,” she said.

“Finally, providers must try to meet AYA survivors where they are. If that’s social media, that’s what we should be doing,” she concluded.

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