Adolescents and young adults are a fascinating group to work with, and now that more attention is being paid to them and the potential barriers to their care and survivorship, I believe we are making progress in understanding the multiple factors contributing to their cancers and in improving their care and survival.
—Susan K. Parsons, MD, MRP
Each year, about 70,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States, almost six times the number of cases diagnosed in children up to 14 years of age. While overall cancer survival rates continue to rise—according to the American Cancer Society, there are currently 14.5 million cancer survivors in the United States—most of that improvement is among pediatric and older adult patients.
For adolescent and young adult patients with cancer, defined by the National Cancer Institute as those between the ages of 15 and 39, survival rates have remained stagnant since 1975. In certain cancer types, such as acute lymphoblastic leukemia, the 5-year survival rate has actually decreased—91% for children younger than 15 years compared with 78% for adolescents aged 15 to 19 years.
The possible reasons for this discrepancy in survival rates are many, including lack of health insurance or underinsurance, delayed diagnosis, lack of participation in clinical trials, inadequate treatment practices, the unique social needs of this age group, and a major emerging potential factor: underlying biologic differences.
To generate attention to the physical, cognitive, and emotional challenges that AYAs face, spur clinical trial development for this age group, and provide ongoing psychological and social support services to AYA survivors, in 2013, Tufts Medical Center in Boston opened the Reid R. Sacco Adolescent and Young Adult Program for Cancer and Hereditary Blood Diseases. So far, the clinic has accepted 60 AYAs who are either on active treatment or have completed treatment for cancer.
The ASCO Post talked with Susan K. Parsons, MD, MRP, Founding Director of the Reid R. Sacco Adolescent and Young Adult Program for Cancer and Hereditary Blood Diseases at Tufts Medical Center, and Tully Saunders, BS, the Program Coordinator, about the issues confronting AYAs during or after a cancer diagnosis and treatment and how programs like Reid R. Sacco’s are meeting the long-term needs of these survivors.
At age 27, Mr. Saunders brought his personal perspective of coping with cancer to our conversation. Diagnosed with a rare form of lung cancer when he was just 3 years old, Mr. Saunders was treated by Dr. Parsons when she was a pediatric oncologist at Dana-Farber Cancer Institute.
Variety of Services
Please talk about the services provided by the Reid R. Sacco Adolescent and Young Adult Program for Cancer and Hereditary Blood Diseases.
Dr. Parsons: Like other AYA programs, we provide holistic patient care. We help our patients with disease and survivorship management, initial and late effects of therapy, and primary and secondary cancer prevention. We help them learn more about their health history and how to self-advocate within the health-care environment. We prepare survivorship care plans for survivors and construct active care plans for all patients, updating them with each subsequent visit.
We also help AYA survivors in ways that are a little bit nontraditional. For example, we focus on many of the life-related issues they are dealing with as a function of their age and developmental stage. To help with this, we have incorporated trained peer navigators into the clinic. The peer navigators have all completed a 12-week course in patient navigation and receive in-depth clinical and administrative supervision. Each patient is assigned a peer navigator who works with the patient on a range of topics, including education, employment, personal and professional relationships, financial concerns, and housing.
The peer navigators and clinicians help the patients explore their cancer history within the context of their life stage and address their psychological, social, and financial needs. One issue that we have grappled with repeatedly is their health insurance status. Some AYAs are transitioning from their parents’ health-care plans. Others don’t have stable employment or income. But regardless of the situation, we help patients navigate through the maze of health insurance options to find an appropriate plan and ensure that they understand their plan’s costs and copays.
Another big area we touch on is educational and vocational counseling. Some patients are dealing with neurocognitive late effects from their treatment. When appropriate, we refer patients to formal neuropsychological testing and provide coaching and discussions about educational and professional goals.
We also help AYAs as they create and maintain social relationships. One of the advantages of this type of life-stage–based program is that our patients feel like they are now part of a group—a feeling they lost as a result of their cancer and treatment.
The program also offers services to help patients maintain health-care follow-up appointments.
Role of Social Media
What role can social media play in helping AYA survivors stay healthy, and how can oncologists be better prepared in using social media to stay current with their patients’ needs?
Dr. Parsons: We recognize that our patients are much more connected to social media than we might be!
Mr. Saunders: True. Many AYAs are engaged in social media. It is heavily incorporated into their daily lives and is their main source of communicating with peers and receiving news.
At our clinic, we are very proactive in reaching out to AYAs through Facebook, our website, e-mail, and blog. We were fortunate to receive a grant to build a secure website so we could have a dedicated patient forum where patients can interact and “meet” each other virtually. Patients receive a user name and can log into a secure portal to connect with other AYAs, privately contact our clinic team, and ask questions about their care. Having this virtual tool has helped us improve the level of care we provide AYAs.
Do you use mobile device apps to keep these survivors engaged in their medical care?
Mr. Saunders: We leverage smart phone technology to e-mail patients if we have a question, want to schedule appointments, and as a reminder to take a daily medication. We ask patients early on about their preferred mode of communication: text, e-mail, or phone call, and we try to accommodate their communication style.
Dr. Parsons: We have found technology to be very powerful in helping patients remember their appointments, medications, and medication schedules. We worked with one patient, who could not remember his medications, to enter his medication list into his smart phone. Now, when he comes into the clinic he just pulls up the list on his phone. Another patient had a difficult time remembering to take her medication, so we helped her set alarms on her smart phone to remind her.
Mr. Saunders: We’ve been pleased with the results of our peer navigator program. A peer navigator is present during every patient visit and represents our “boots on the ground” to help patients access resources, find clinical trial information, or program their smart phone or other mobile device to set appointment or medication reminders.
Why haven’t survival rates improved for AYAs as they have for younger and older patients with cancer?
Dr. Parsons: There are many, many factors contributing to the lack of survival progress among AYAs. This gap is a huge motivator for those of us involved in AYA care to determine how to improve those survival rates. Several reasons for this lack of progress have been proposed.
Prior to the Affordable Care Act, underinsurance or lack of insurance was a huge problem for this age group, but with provisions in the Affordable Care Act that allow some children to stay on their parent’s insurance plans until age 26 and with the elimination of preexisting conditions, more people in this age group have insurance, so that is one less health barrier to deal with.
The other issue is a function of age and a sense of invincibility. Some AYAs believe that cancer only happens to old people. Health-care providers, too, don’t have cancer in the front of their minds when they are examining people in this age group, so we often see delayed diagnosis as a result. Many of our survivors believe that cancer only strikes once, which is why it is challenging to sell some AYAs on secondary-cancer prevention.
Some AYA experts have also argued that there may be underlying biologic differences in this age group. Furthermore, we may not be treating some of the diseases aggressively enough. Emerging research suggests that treatment of some diseases may benefit from a pediatric approach, while others may best be treated with an adult approach.
The biologic differences are intriguing to us. Several interesting studies are underway, looking at whether there is something about when these cancers occur, how they present, and how they respond to treatment that may be different in this age group.
Several years ago, Wendy Stock, MD [Professor of Medicine, Section of Hematology/Oncology and Director of the Leukemia Program at the University of Chicago Comprehensive Cancer Center], did a study1 that examined the survival differences of AYAs with acute lymphoblastic leukemia being treated on adult chemotherapy regimens vs pediatric chemotherapy regimens. While the individual chemotherapy drugs were similar, the doses and schedules were different. The study showed a 63% disease-free survival for individuals on pediatric trials vs 34% for those on adult trials.
Similar studies have been undertaken for patients with sarcoma and lymphoma to see which treatment approach would yield better outcomes for patients in this age group. There may not be a one-size-fits-all approach.
The good news is that there is now heightened awareness that much more research is needed in this area.
How can oncologists encourage their patients to adhere to care recommendations?
Dr. Parsons: A lot of discussion is needed to convince AYAs to follow care guidelines. Some patients want to see the evidence behind the guidelines, while others don’t want to hear any of the details. Some are worried about copays or about missing time from work or school.
We provide each patient with a concrete care plan, including the specific follow-up tests, indication(s) for these tests, the date of the last test, and the person responsible for getting the test done. That responsible party might be the AYA team, the primary care provider, or the patient him/herself.
We review the updated care plan at each visit and share a copy with the primary care provider. By clearly outlining and communicating care recommendations, we hope to empower patients to effectively manage their care.
Do you have any closing thoughts about working with AYAs?
Adolescents and young adults are a fascinating group to work with. Now that more attention is being paid to them and the potential barriers to their care and survivorship, I believe we will make progress in understanding the multiple factors contributing to their cancers and in improving their care and survival. ■
Disclosure: Dr. Parsons and Mr. Saunders reported no potential conflicts of interest.
1. Stock W, La M, Sanford B, et al: What determines the outcomes for adolescents and young adults with acute lymphoblastic leukemia treated on cooperative group protocols? A comparison of Children’s Cancer Group and Cancer Leukemia Group B studies. Blood 112:1646-1654, 2008.