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Survival lags for adolescents, young adults with cancer
Significant progress has been made in the last 5 years, but more work remains.
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In recent years, the oncology community has made tremendous strides in increasing cancer survival among children and older adults, but little progress in cancer survival rates has been seen during the last 20 years for patients aged 15 to 39 years, an age group referred to as adolescents and young adults.
“For the last few decades, a lot of research efforts were put into in the [very] young and the [very] old. In children, because there was a peak in incidence, and in older adults, because cancer is primarily a disease of aging,” said Archie Bleyer, MD, medical director, clinical research and director, DEFEAT Cancer at St. Charles Regional Cancer Center. “Over the course of the following 40 to 50 years, we left something behind: The orphans of cancer are the 15- to 39-year-old age group.”
Although the incidence of cancer among this age group is lower than that of older adults, cancer still is a significant problem. According to data from the SEER database, about 70,000 people aged 15 to 39 years are diagnosed with cancer each year, a number that is eight times that of children aged younger than 15 years. Further, cancer is the most common cause of death in this age group aside from homicide, suicide and accidental injury.
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Photo courtesy of Brandon Hayes-Lattin, MD |
Recently, increased attention has slowly begun to be paid to cancer in adolescents and young adults (AYA) and the unique challenges they face. These challenges include issues specific to cancer types and disease etiologies, health services challenges and psychosocial challenges.
HemOnc Today recently interviewed key leaders in the field of adolescent and young adult cancer to discuss these topics further. Interestingly, many of them mentioned that because the field is so new, it is hard to say that any oncologist is yet an expert in it.
Disease-specific challenges
One of the unique challenges in treating AYA is that cancer itself presents differently in this age group.
“There are six types of cancer that comprise about two-thirds of the cancers seen in teens and young adults,” Rebecca H. Johnson, MD, medical director of the Adolescent and Young Adult oncology program at Seattle Children’s Hospital, told HemOnc Today. “These cancers are breast, lymphoma, melanoma, thyroid, and male and female gonadal cancers.”
Certain hematologic malignancies, such as Hodkgin’s lymphoma, and sarcomas also occur more frequently among this population.
“These cancers are a relatively unique mix of tumors, and the reason why they occur more frequently in young adulthood are not clear,” said Brandon Hayes-Lattin, MD, medical director of the adolescent and young adult oncology program at Oregon Health & Science University Knight Cancer Institute. “As a general rule, these are not cancers that are occurring because of years or decades of toxic exposure or serial genetic mutations like in colon cancer or lung cancer. So we think pathogenesis is different.”
Furthermore, even when cancers typically seen in older adults occur in adolescents and young adults, there seem to be biologic differences in the disease, Hayes-Lattin said. For example, when women aged younger than 40 years get breast cancer, it is more likely to be estrogen receptor negative and have certain specific gene alterations, such as p53. These differences are seen in other common malignancies, too, such as colon cancer, gastrointestinal stromal tumors, acute lymphoblastic leukemia and renal cell carcinoma.
Unfortunately, little is known about why these cancers are unique to this age group and how to most successfully treat them. For this reason, survival curves have stagnated.
“We didn’t learn how to treat this age group because no one studied it,” Bleyer said.
Lack of research
A lack of research into this age group is a multifaceted problem linked to clinical trial participation, or a lack thereof. According to the NCI, only about 2% of patients aged 20 to 39 years are treated in clinical trials, compared with about 60% or more of children aged less than 15 years.
“That means that 98% or more were never studied or given a chance to be on trial during their cancer experience,” Bleyer said.
It is unclear whether the lack of participation is because the patients refuse to enroll in clinical trials or whether physicians are not offering patients information on trials due to a concern that this age group might not be compliant with treatment protocols.
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However, among the multiple reasons posited for this lack of participation, one thing is known: There is a definite lack of available trials for patients in this age group, particularly for adolescents aged 15 to 18 years. For example, a study published in 2007 by Shaw and colleagues found that at one children’s hospital, 38% of children younger than age 15 years enrolled in a clinical trial while only 27% of those aged older than 15 years were enrolled (P=.03). Fifty-seven percent of the older adolescent group was not enrolled in a trial because one was not available to them.
According to Johnson, this problem is not uncommon. If a patient is 18 years of age, has a cancer that is not typically studied in adult trials and is being treated somewhere with no pediatric arm, they will have no options for clinical trial enrollment. The same is true of an adolescent being treated at a pediatric center with a cancer normally diagnosed in adults.
In addition, ready access to clinical trials sites also may be a barrier to participation.
“In the medical community there is this belief or idea that a majority of patients get treated at major university centers, but the reality is that more than 80% of young adults with cancer get treated at private practices or community hospitals,” said Stuart Siegel, MD, associate director for pediatric oncology at the USC Norris Comprehensive Cancer Center. “That means that oncologists everywhere need to keep a careful eye on where there might be a clinical trial available for their patients of this age.”
Much of the problem stems from a divide between the pediatric oncology community and the adult oncology community. Although both arenas have had successes and outcomes largely are good, there still are differences in how they function when it comes to research, according to Hayes-Lattin, who, himself, is a survivor of testicular cancer.
“Although testicular cancer is a rare cancer, it is the most common cancer that a 28-year-old man can get. During my treatment, I discovered that in the pediatric and adult oncology community everything is different. Treatment protocols are different, staging systems are different … It is two entirely separate communities and cultures approaching the same diseases,” Hayes-Lattin said.
These two areas of oncology really do function as separate silos, Johnson agreed. “As of several years ago, among 703 active, applicable NCI-sponsored trials, only 26 phase 3 trials have no age limitations that did not exclude a portion of the adolescent and young adult patient population.”
However, progress is being made. According to Johnson, in the past 5 years there has been progress, both in the Children’s Oncology Group and in adult cooperative groups, to extend pediatric trials to include older ages where appropriate, and in adult trials to lower the eligibility age to include young adults.
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Health services challenges
Another reason why adolescents and young adults may not be participating in clinical trials is a lack of health insurance. Data from the last census indicated that adults aged 19 to 29 years are the largest and fastest growing group of uninsured people in the United States. As of 2007, there were an estimated 13.2 million uninsured young adults nationwide.
“Older adolescents, and particularly young adults, are the most underinsured of any age group,” Siegel said. “There are a multitude of reasons why this is the case. Some patients are no longer covered as a dependent on their parents’ policy, but do not yet have the type of job that offers coverage. Others simply may not be able to afford coverage.”
This also is a period of life when people are not typically being seen regularly by a primary care physician, whether it is because they are transitioning from a pediatrician, attending a health center at college or simply cannot afford to go see a doctor.
“In addition, there is a bit of a ‘wimp’ factor, or a belief that people of this age don’t get cancer,” Bleyer said. “People of this age may not be encouraged to go have something checked out by a physician, or are told to ‘get over it.’”
Even when a patient of this age eventually does get to a doctor, physicians in the emergency room, in internal medicine or in a family practice setting may not always think ‘cancer,’ according to Bleyer.
“I have seen many patients that had a work-up done for another condition before the cancer diagnosis becomes obvious,” Bleyer said. “Unfortunately this means the cancer was caught at a later stage, frequently reducing a patient’s survival.”
Psychosocial support
The current health system also is lacking in proper psychosocial support for adolescents and young adults with cancer. Although it would seem that age is the most distinguishing factor of adolescent and young adult cancer patients from children or older adults, in reality it is a much more complex differentiation.
“In patients of this age, issues are different, concerns are different, and the entire way you are approaching life at these ages is very different,” said Heidi Schultz Adams, founder of Planet Cancer, and former advocacy co-chair of the Livestrong Young Adult Alliance, Austin, Texas.
Adams started Planet Cancer, an online community for adolescents and young adults with cancer, after her own experience as an AYA patient diagnosed with Ewing’s sarcoma at age 26 years.
“When you get cancer at this age, the system is very fragmented between the pediatric and adult worlds,” she said. “It is highly unlikely to see anybody your own age in the waiting room. I hardly saw anyone my age during the whole course of my treatment. You start to feel like you are the only person in the whole world going through this situation.”
Adolescents and young adults also are going through a time of their lives that pose significant challenges when diagnosed with cancer.
“Many patients are expected to continue to go to school or work, people are dating or getting married, or have young children that need to be cared for. In some cases, young adults are forced to move back in with their parents,” Siegel said. “Cancer comes along and changes everything.”
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That is why social and psychosocial support are so important. However, supportive care services that exist frequently target the issues of older adults or young children.
“In my opinion, the world of psychiatry and psychology in relation to young adult medicine is very weak,” Bleyer said. “It is hard to find real experts in managing young people with cancer going through these psychosocial problems.”
Bleyer said that although support groups do exist, frequently within online communities, there are few that have a coinciding professional support infrastructure.
Facing common obstacles
Despite all of the challenges that exist, the oncology community has started to respond and work to address these issues.
“A new subspecialty is starting,” Johnson said. “The Livestrong Young Adult Alliance has done a lot of work in the last several years to create guidelines for what would constitute good clinical care for teens and young adults, with the idea that defining those guidelines would help cancer centers to better serve that population.”
It is clear there must be programs with physicians who are dedicated to the care of these patients, who have a knowledge base and expertise to directly address their needs, Siegel said. This will require the involvement of physicians, nursing staff, patient navigators and others who are knowledgeable and comfortable treating these patients.
“In order to make a move toward developing a program for adolescents and young adults, you also have to have a physician champion who is going to be the main driver and energy source for developing it and moving it,” Siegel said.
Hayes-Lattin has made an effort to be that champion at the OHSU Knight Cancer Institute, where he said significant progress has been made in creating a young adult-friendly environment.
“We have really recognized that young adults are different and are trying to help them not feel isolated,” Hayes-Lattin said. At OHSU, the area in which these patients are treating has been outfitted with a big-screen television, a Wii and a DVD player so patients can hang out with each other or invite friends to the hospital, “instead of feeling like they are stuck in a ward that is meant for their parents or grandparents,” Hayes-Lattin said.
In addition, Hayes-Lattin has begun an effort to jointly list clinical trials occurring within the adult and pediatric oncologic communities.
“I get a weekly email from the pediatric group that lists all open trials and the ages of eligibility and vice versa for adults,” he said.
Broad changes will come when more widespread training is instituted for health professionals who want to treat adolescents and young adults. In a position statement published in 2010, Hayes-Lattin and Siegel, together with Beth Mathews-Bradshaw, wrote that there were three critical areas of expertise that all health care professionals working with this age group should have: adolescent and young adult-specific knowledge; care delivery specific to this age group; and a competency in the application and delivery of this knowledge.
Finally, improved awareness among physicians and people aged between 15 and 39 years of the risks for cancer and the ways one can screen for it also is a big step toward improving survival outcomes among this age group.
“This is true, not just for this large group of diseases known as ‘cancer’, but for all illnesses and diseases that adolescents and young adults might face,” Bleyer said. – by Leah Lawrence
For more information:
- Collins SR. www.commonwealthfund.org. Accessed Sept. 19, 2011.
- Harlan LC. Journal of Cancer Survivorship Research and Practice. 2011:doi:10.1007/s11764-011-0173-y.
- Hayes-Lattin B. J Clin Oncol. 2010 Nov 10;28(32):4858-61. Epub 2010 Sep 7.
- LIVESTRONG Young Adult Alliance Steering Committee. Closing the gap: a strategic plan. www.livestrong.org/pdfs/LAF-YAA-Report-pdf. Accessed Sept. 19, 2011.
- Shaw PH. J Pediatr Hematol Oncol. 2007;29:811-814.
- Tonorezos ES. Cancer. 2011;117:2295-2300.
Disclosures: Drs. Bleyer, Hayes-Lattin, Johnson and Siegel, and Ms. Schultz Adams, report no relevant financial disclosures.
Is the age range used for AYA cancers -- ages 15 to 39 years -- too broad?
It may be broad but it is still optimal.
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There are many shades of gray to the biological and existential changes taking place through adolescence and young adulthood. The broad range of 15- to 39-year-old patients can be divided into subgroups many ways, but they remain unified by their difference from other patient groups.
As individuals, patients aged 15 to 39 years can be clustered into a subgroup based on their emotional development and put into boxes according to Piaget or Erikson. In reference to cancer diagnoses, they can be classified into several different categories – whether by the molecular makeup or ‘pediatric’ vs. ‘adult’ diagnoses. It can be argued that there are more differences than similarities: that the diagnoses range from neuroblastoma to breast cancer; that the biology of a lymphoma in a 15-year-old is worlds away from that in a 35-year-old; that the way in which a 15-year-old tolerates chemotherapy is very different from the toxicities potentially experienced by a 39-year-old.
Ultimately, though, providers and patients alike face unique and unified challenges with this group. Patients aged 15 to 39 years share the weight of feeling like they don’t belong, of needing to talk about work, school and fertility with a sense of urgency not relevant for either the younger children or the older adults. Most importantly, the providers and patients share the burden of lower clinical trial enrollment and lack of improvement in survival. Patients in this age range have fallen through the cracks. Clinicians caring for these patients, whether in a pediatric or adult oncology program, are challenged by the unique biology as well as equally unique psychosocial needs. Excluding the patients on either end of this spectrum does a disservice to their emotional and physical health and needs.
Depending on the structure of AYA care at a given institution, one provider or one physical institution may not be able to care for the entire range of 15- to 39-year-old patients based on age limits or physical and theoretical departmental turf wars. Pediatric and adult programs may fragment both the patient population and AYA champions within the institution. While building or awaiting the ideal stand-alone AYA oncology program or AYAO specialist, psychosocial and medical services structured within a ‘virtual’ or a consultation-based program can support and unify healthcare providers while delivering a valuable service for this unique, albeit broad, range of cancer patients.
Julie Wolfson, MD, MSHS, is an assistant professor in the Department of Pediatrics at City of Hope, Duarte, Calif. Disclosure: Dr. Wolfson reports no relevant financial disclosures.
It depends on where you’re practicing.
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Patients aged 15 to 39 years undeniably share challenges, both medically and psychosocially. They are inextricably linked by these difficulties and by their lack of access to and success within the system as it exists.
Nevertheless, most physicians are trained in either pediatric or medical oncology and as such will have limitations to their comfort levels in treating younger or older patients. Although AYAO has seen a surge within the pediatric oncology world, most pediatric oncologists likely would not feel comfortable treating patients older than the age of 29 years, and many actually older than 24 years. Many pediatric institutions or services will limit their care to patients younger than 24 years, or even 18 years. As such, the young adult population then relies on medical oncology institutions and services, and often on the community-based structure of medical oncology. Similarly, many medical oncologists would not feel comfortable treating patients younger than the age of 18 years, and would limit their service as such.
Established AYAO programs have set upper age limits anywhere from 24 to 39 years, most for institutional-specific or theoretical reasons. While partnerships between services and institutions can provide bridges between adult and pediatric physicians and resources for both groups, institutions and services without dedicated AYAO specialists caring for the entire age range are left without a specialist on one extreme or the other.
With a strict AYAO definition by age, stand-alone centers and services that care for children are left without providers for the older young adults, and medical oncology services are left without providers for many adolescents. Whether a survivorship program is embedded in the AYAO program adds another dimension to the availability of knowledgeable providers.
Although ages 15 to 39 years may be just right for a combined cancer center, it may be too broad for a children’s hospital or medical oncology unit. A survivorship clinic may fit with one model but not another. While a broad definition of AYAO age is paramount for the purposes of research, flexibility to restrict the AYA definition may be the key to being inclusive in the clinic.
Smita Bhatia, MD, MPH, is professor and chair, Department of Population Sciences, and Ruth Ziegler Chair in Population Research at City of Hope, Duarte, Calif. Disclosure: Dr. Bhatia reports no relevant financial disclosures.