What Should the Age Range Be for AYA Oncology?

Abstract

Journal of Adolescent and Young Adult OncologyVol. 1, No. 1 ControversiesFree AccessWhat Should the Age Range Be for AYA Oncology?Published Online:4 May 2011https://doi.org/10.1089/jayao.2011.1505AboutSectionsPDF/EPUB ToolsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail The field of adolescent and young adult oncology (AYAO) is developing and evolving, providing fertile ground for debate, discussion, and the exchange of opinions. In the “Controversies” feature of each issue ofJournal of Adolescent and Young Adult Oncology, we will pose a key AYAO question to people from a wide range of organizations, geographical locations, and professions.Those working with pediatric or older adult patients must only concern themselves with either the upper or lower age bounds, respectively, of their field. However, those working in AYAO must consider both ends of the spectrum, and the implications of any answer. Both between and within countries there is much variation in the definitions, and indeed even in the terminology, used to describe the AYA cancer population. In the United States, the 2006 Surveillance, Epidemiology and End Results (SEER) program report used the 15–29 age range,1 while the 2006 Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) report used 15–392—now the standard used by the National Cancer Institute (NCI) as well as the age range generally used byJAYAO. Canada generally uses the same 15–29 age range as SEER,3 while Australia tends to favor 15–25.4 In the United Kingdom, the Teenage Cancer Trust focuses on teenagers and young adults (TYAs) aged 13–24,5 though European members of EUROCARE employ the 15–24 bracket.6 In this first issue, we asked “If you were solely in charge of AYAO for a day, what age range would choose for AYAO, and why?”—EditorsReferences1 Bleyer AO'Leary MBarr Ret 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, MDNational Cancer Institute2006March252011www.seer.cancer.gov/publications/aya1. Bleyer A, O'Leary M, Barr R, 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, MD: National Cancer Institute; 2006. Accessed March 25, 2011 from: www.seer.cancer.gov/publications/aya Google Scholar2 Adolescent and Young Adult Oncology Progress Review GroupClosing the gap: research and cancer care imperatives for adolescents and young adults with cancer (NIH Publication No. 06-6067)Bethesda, MDDepartment of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult AllianceAugust2006March252011www.planningcancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf2. Adolescent and Young Adult Oncology Progress Review Group. Closing the gap: research and cancer care imperatives for adolescents and young adults with cancer (NIH Publication No. 06-6067). Bethesda, MD: Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance; August 2006. Accessed March 25, 2011 from: www.planningcancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf Google Scholar3 Canadian Cancer SocietyCanadian cancer statistics 2009TorontoCanadian Cancer SocietyApril2009March252011www.cancer.ca/statistics3. Canadian Cancer Society. Canadian cancer statistics 2009; Toronto: Canadian Cancer Society; April 2009. Accessed March 25, 2011 from: www.cancer.ca/statistics Google Scholar4 CanTeen, Cancer AustraliaNational service delivery framework for adolescents and young adults with cancerCanberra, AustraliaAustralian Government, Cancer AustraliaFebruary2009March252011www.canteen.org.au/docs/AYA_NSDF_19%20Feb_2009.pdf4. CanTeen, Cancer Australia. National service delivery framework for adolescents and young adults with cancer. Canberra, Australia: Australian Government, Cancer Australia; February 2009. Accessed March 25, 2011 from: www.canteen.org.au/docs/AYA_NSDF_19%20Feb_2009.pdf Google Scholar5 Teenage Cancer TrustMarch252011www.teenagecancertrust.org5. Teenage Cancer Trust. Accessed March 25, 2011 from: www.teenagecancertrust.org Google Scholar6 Gatta GZigon GCapocaccia Ret al.the EUROCARE Working GroupSurvival of European children and young adults with cancer diagnosed 1995–2002Eur J Cancer.2009459921005.6. Gatta G, Zigon G, Capocaccia R, et al., the EUROCARE Working Group. Survival of European children and young adults with cancer diagnosed 1995–2002. Eur J Cancer. 2009;45:992–1005. Crossref, Medline, Google ScholarMy recommendation for the age range defining the AYA oncology population is to subdivide NCI's 15–39 age range into three age cohorts that I would define as early young adulthood (15–18 years old), young adulthood (19–24), and late young adulthood (25–39). I feel these subdivisions would best account for the differential physiological and psychosocial realities experienced by AYAs within each age category. Plus, it has important implications in the design of clinical interventions and research protocols.From a physiological standpoint, one needs to recognize how the maturing brain and endocrine system may particularly affect a cohort. For example, considering that the frontal lobes develop last and only reach full maturation in the early and mid-20s, problems with executive functions involving foresightedness, long-term planning, and decision making, as well as problems with impulse control, may be more characteristic of the younger versus older cohorts.From a psychosocial standpoint, the developmental milestones to be reached and the issues at the forefront may not only differ significantly from one cohort to another but also can be sources of great distress. For the 15–18 cohort, individuating from and setting boundaries from parents, such as in treatment decision making, may be reported as important issues. For the 19–24 age cohort, the early 20s are a period of flux with social and sexual experimentation, and problems associated with dating or starting an academic degree or a career may feature as dominant complaints. Lastly, for the 25–39 age cohort, the late 20s and the 30s are a period of “settling down” or consolidation of existential goals, and reported distress may stem from problems in fertility or starting a family, having to care for young children, maintaining couple relationships, completing an academic degree, or furthering the career to achieve financial autonomy.Forcing an emerging community to adopt a rigid age definition is surely strategically unsound. The appropriate age range for AYAO will be necessarily dependent on context. Using a chronological definition is too confining, as the context needs to take into account the developmental age and psychosocial circumstances of a specific patient, as well as the underlying biology of the malignant disease for which the patient requires treatment.With respect to the provision of healthcare, children's hospitals have adopted upper age limits ranging from 12 in some low-income countries to 25 in a few institutions in the United States. An age limit of 16 or 18 is generally more common. The Teenage Cancer Trust in the United Kingdom has set an upper age limit of 24 for its clinical units. Increasing that boundary to 29 would double the number of patients eligible for admission, and so the resources attendant on that expansion. Adopting an age range of 15–39 is neither financially viable when staffed to a pediatric model, nor sensible when viewed from a developmental perspective and the distribution of expertise required to deal with a very broad array of diseases. The exigencies of healthcare resourcing are likely to restrict the model of care providing active treatment to AYAs with cancer to an age range encompassing mid-teens to mid-20s in most parts of the world.The NCI in the United States has avoided a single age range, taking 15–29 for the purposes of clinical epidemiology as in the SEER report and 15–39 when considering a wider agenda for AYAO, as reflected in the considerations of the Progress Review Group on this topic. In Canada, we have followed the example of SEER, while in Europe the consortium of 23 countries contributing to EUROCARE-4 has used 15–24 as the age range for AYAs with cancer.The priority of improving the accrual of AYAs to cancer clinical trials will require a flexibility that accords with the variety of age distributions for different forms of malignant diseases. The Children's Oncology Group sarcoma trial AEWS1031 is an example of this, in which the age limit was extended up to 50 through the Cancer Trials Support Unit.1These are only a few circumstances that highlight the need to be adaptable to the realities of limitations, as well as opportunities. Let us not “paint ourselves into a chronological corner” and in so doing miss the potential to advance AYAO on several quite different fronts.References1 Mascarenhas LBond MCSeibel NLExpanded access through Cancer Trials Support Unit to Children's Oncology Group sarcoma trial AEWS1031 for adolescents and young adultsJ Adolesc Young Adult Oncol201116163.1. Mascarenhas L, Bond MC, Seibel NL. Expanded access through Cancer Trials Support Unit to Children's Oncology Group sarcoma trial AEWS1031 for adolescents and young adults. J Adolesc Young Adult Oncol. 2011;1:61–63. Google ScholarWhen does childhood end? At what age should a young person with cancer no longer be considered a pediatric patient but instead a candidate for adolescent and young adult oncology? In my opinion, there can be no uniform answer. Some healthcare systems limit access to pediatric oncology and thereby to specialists with expertise for most cancers of adolescence (and even for quite a few of those arising early in the third decade of life) to children below 14 years of age. In countries with such restrictive healthcare systems, 14-year-olds face the threat of being treated on units and by staff far better adapted to geriatric populations than to young people going through crucial stages of their physical, intellectual, emotional, and psychosocial development. In such countries, it would seem prudent to establish environments specializing in AYAO and to consider a 14-year-old a member of that AYAO spectrum. In healthcare systems in which pediatric oncology is able to provide excellent care for both children and adolescents up to the age of 18 or even older, it would seem quite inappropriate to define a strict lower age limit for AYAO.When are you too old to be young? What is the upper age range at which patients should no longer be considered young adults? Again, there cannot be a uniform answer. For some cancers that usually arise in geriatric populations, such as multiple myeloma, a 40- or even 50-year-old patient might still be considered “young,” but would certainly not find anyone with any experience in their specific disease on an AYAO ward. For other malignancies such as neuroblastoma, Wilms tumor, or embryonal rhabdomyosarcoma, patients of that age with “pediatric” tumors might rightly be considered “very old” for their respective disease, but would still benefit from treatment in an environment specializing in cancers of the young because they suffer from a “young” malignancy.These examples argue that AYAO should not be exclusive. It should not try to define itself through claiming a monopoly for a certain age range (and disregarding all patients not within that specific range). Any AYAO definition solely based on fixed age ranges would be highly artificial and hence the target of justified criticism. To me, a patient- and disease-oriented approach towards AYAO would seem far more appropriate.With the increasing interest currently being dedicated by the oncology community to the problem of AYA patients with cancer, it becomes important to define the age range covered by the definition of AYA oncology. This is not a question of hairsplitting; an internationally shared definition may facilitate the development of AYA programs in contexts where political or administrative barriers might otherwise look like mountains impossible to climb, but also where there is resistance to cooperation between groups of pediatric and adult oncologists due to mutual diffidence and an inclination for each to defend their own background and strategies, being afraid to lose their role.The AYA population has been defined in various ways: the NCI's AYAO PRG proposed an age range from 15 to 39 years, but there are still inconsistencies, particularly as regards the upper age limit. It may be generally accepted that adolescence starts at 14 years of age: patients who are 15–19 years old differ significantly from pre-pubertal patients in terms of their physical, physiological, cognitive, and behavioral characteristics. Differences in body composition, organ size and maturity, and hormone status may influence the relationships between tumor cells and the host, drug absorption and clearance, and susceptibility to treatment morbidities. The definition of “young adulthood” is less clear, however. In today's society, many 40- (or even 50-) year-olds may consider themselves as young adults, in the conviction that youth is mainly a state of mind. From a medical standpoint, any fixed limit in patients with neoplasms would probably be arbitrary. The definition would be likely to change in relation to different situations and different types of tumor, given the variety of malignancies that can occur in young adults.I am a pediatric oncologist, however, and the efforts being made at our center, as well as in the AYA project organized by the Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP), are focusing on increasing the likelihood of AYAs with “pediatric” cancers being referred to pediatric centers and enrolled in pediatric protocols. That is why for practical purposes, at this stage, we have arbitrarily opted to consider patients in the range of 15 to 24 years of age, and this appears to form a rather homogeneous group that we can manage in the pediatric setting.If it were up to me, the age range for AYAO would be defined so that it includes nearly all college students. My professional life as a general internist has been focused on college health, and I am concerned about the obstacles that college students face when dealing with cancer and other serious health problems. While the stereotypical college student is thought of as being 18 to 22 years old, well-off financially, and in excellent health, this does not paint an accurate picture of the student population in United States post-secondary education today.United States census figures show that students in higher education actually comprise a fairly broad age span. Of the 13.2 million individuals who classified themselves as full-time college students in 2008, four million were in their teens, more than six million were between the ages of 20 and 24, two million were aged 25–34, and nearly one million were over the age of 35. In addition, more than five million individuals were part-time post-secondary students, and they tended to be significantly older (fewer than 0.4 million in their teens and nearly two million over the age of 35). The average age of college students in the United States is in the mid-20s, and many are in their 30s or even older.1Even though students in higher education tend to be better off financially than their age-matched non-college peers, college students still have a high rate of being uninsured or underinsured. Many schools do not require students to carry health insurance as a condition of enrollment, and some health insurance plans sold to both undergraduate and graduate students provide inadequate coverage. Lack of coverage in this age group is a risk factor for delayed diagnosis and treatment for potentially serious health conditions.While AYAs who are going to school enjoy relatively good health, the growing burden of chronic disease has affected this sociodemographic group just as it has the rest of the population. Advances in medical science have allowed more students to enter and stay in college with certain types of serious diseases that would have made higher education impossible for them a generation ago; inflammatory bowel disease and various mental health disorders are common examples. The same phenomenon has also resulted in more survivors of childhood cancer becoming college students, and more college students diagnosed with a malignancy are able to continue their education while undergoing treatment. We see about five new cases of cancer in the student population at the University of Rochester (approximately 8000) each year.So I want the age range for AYAO to begin in the teens (or younger—I will leave the decision on the exact number for the low end of the range to those who treat this population) and go up at least through to the age of 39. This would capture the large majority of the college student population, which would allow us to collect data, do research, and develop programs to improve the health of the next generation of leaders of our society.References1 Current population survey, October 2009school enrollment and internet useWashington, DCBureau of the Census2010Table 5, Type of college and year enrolled for college students 15 years old and over, by age, sex, race, attendance status, control of school, disability status, and enrollment status.1. Current population survey, October 2009: school enrollment and internet use. Washington, DC: Bureau of the Census; 2010. Table 5, Type of college and year enrolled for college students 15 years old and over, by age, sex, race, attendance status, control of school, disability status, and enrollment status. Google ScholarFrom a psychosocial perspective, defining the AYA cancer patient by a range of numbers can be very difficult, especially given the impact of shifting societal norms. As an oncology social worker, I tend to be more concerned with patients' circumstantial age as opposed to their chronological age. Rather than using chronological age, I find that assessing each individual patient's current psychological and social states often serves as a better indication of the unique needs that we talk about for the AYAO population. With the assumptions that nothing is inherently known and change is a constant in any population, I believe that the age range of 15–39 is currently appropriate, with the caution, however, that as society continues to change we will encounter individuals outside of this age range who will benefit from having access to AYAO support services.For example, just recently a woman in her 50s recently diagnosed with stage IV colon cancer was referred to me. This particular woman struggled with infertility for several years and now has two young children (ages 7 and 10). During the assessment process, I realized that she fit very well into what I would consider my young adult population, though chronologically this would not be true. Her needs were very much in line with the unique challenges generally facing our young adult patients. Failing to recognize this in my clinical work with her simply because she did not fit the exclusive age range we have created would, in my opinion, have done her a great disservice.Though I recognize the purpose and meaning of defining this group by a chronological age range, I do believe that it can lead to under-serving patients who would benefit from being able to identify with the AYAO community. As clinicians in the field, we are at times forced by our ethical obligations to our patients to flex this age range in order to provide much needed support services to our patients. In my personal experience, this seems to increasingly be the case as women's roles in family and society continue to grow and generations create their own developmental milestones. I believe that in the future, the AYAO community at large might be forced to re-evaluate the denoted age range in order to keep in step with generational, cultural, and societal trends. Given the sense of progressiveness inherent in the AYAO community, it is my belief that it becomes our obligation to be open to change so we continue to educate, serve, and bring awareness to the population we set out to help.In the United Kingdom, AYA care is defined by the 13–24 age range, and services have developed to cater for these requirements. In order to organize and deliver safe, skilled, and consistent care, there needs to be a critical mass of patients and staff. However, some geographical areas may not have the population to commission such services in an economical way.In Leeds in the United Kingdom, we have developed a split-site unit. In it, AYAs aged 13–18 are in an eight-bed unit based within Children's Services, ensuring that pediatricians are available to manage pediatric medical/surgical problems. Ideally, these are professionals trained in both pediatric and adult specialties. Managerially, the unit is embedded within Pediatric Oncology Services, thus ensuring staffing flexibility. The other part of the unit—the Young Adult Unit taking patients aged 18–24—is a standalone unit in a large oncology center based within Adult Cancer Services, thus ensuring young adult expertise. Between the two physically separate hospital facilities, there is a team of AYA professionals who bridge the areas, providing expertise and a seamless service for the young people and their families.There are times when the Young Adult Unit has empty beds, during which these beds can be filled by patients up to the age of 30 who are outliers from other wards. However, a younger patient needing one of these beds takes precedence. This, in practice, works very well, and those overflow patients aged up to 30 have similar needs to those who are younger. The feedback from these patients and staff is positive and they fit in well with the other patients. Developing units may be more cost effective with the larger up-to-30 age range.However, even within these age constraints there are many differing needs. For example, many 13–15-year-olds have similar needs and levels of maturity. But, for example, a 24-year-old with their own family, business, and so on may show more maturity and coping skills than a 27-year-old still living at home with less developed life skills. As such, these units require thoughtful staffing and the skills of a team of people around them. While much of the literature defines “emerging adulthood” as extending up to the age of 40, anecdotally I feel that this would be too large an age range around which to develop services.In conclusion, in the United Kingdom developing oncology services around patients aged 13–24-year-olds works well when there is the critical mass and infrastructure to support it. In an ideal world, AYAO services reaching up to those aged 30 are possible and may help in developing economical services. All of the above clearly depend on local need and economic viability, and there certainly does not seem to be “one approach that fits all.”A definition of the AYAO age range does not mean a lot to me, as I believe it is our job as the healthcare team to meet the individualized needs of each patient, regardless of the patient's age. However, I also know it is important to define a group when developing a program to ensure appropriate and thorough care. The definition of age range is one of our foundational issues in the pediatric oncology arena when trying to provide appropriate care to these individuals.To determine an appropriate age range for this group, I have to go back to the science of human development and look at Erikson's stages of development and apply it to the new age. For instance, the lower end of an AYA program should include Erikson's Identity versus Role Confusion stage span (12–19) because of the identity crisis these individuals are struggling with daily. The younger adolescents are dealing with body changes and the way they think as they search for their own intentions and those of others, all while starting to anticipate their lives as an adult. Although Erikson included the ages of 12–19 in his definition of adolescence, I would expand this range to 23 or 24, with the higher end at 30 for young adults. With our fast-pace lives, changing technology, and pressure to deliver, kids are jumping from one situation to another.Many kids miss the traditional social skills modeling because their communication is electronic and instantaneous. They are comfortable in their own space, but when anything changes, such as a cancer diagnosis, they often regress into a dependent, timid patient. Young adults in their mid-20s are struggling through higher education and trying to establish long-term relationships with others.When caring for these patients, the healthcare team is not only ensuring that the patient's medical needs are met, but also their psychosocial needs, which are often the toughest part of the plan of care. These concerns include ensuring that these patients have mature relationships with others in their age group; proper sexual identity; and acceptance of their own body image, especially when their bodies change due to hair loss, amputations, and other changes due to medical care or disease. It is important to help both the patient and parents achieve emotional independence, as a chronic disease process can delay this milestone dramatically. As an AYA moves through the journey of cancer and closer to a normal lifestyle, the healthcare team should ensure that the patient is thinking about the future, including career, marriage, and family, along with ensuring that we have preserved the patient's ability to acquire a set of values and ethics to guide their behavior and grow into a socially responsible adult.Therefore, the age range I would support is 12–30, allowing the healthcare team to concentrate on specific growth and developmental behaviors to treat the whole body for disease.If I were solely in charge of AYAO, I would choose the age range between 12 and 30 years of age. In my opinion, AYAs with cancer should be treated by the specialist that has the most expertise on the specific disease type. For instance, pediatric oncologists have more experience in treating patients with osteosarcoma or Ewing sarcoma family of tumors, whereas clinical oncologists are skilled in treating breast cancer patients. Points relevant to this patient population are summarized below.Over the last 30 years, significant improvement has been achieved in the understanding and treatment of children with cancer. The same cannot be said about AYAs with cancer. The incidence of cancer in those aged 15 to 29 has increased faster, and this has not been accompanied by a proportional improvement in outcome. Actually, the reduction in cancer mortality has been lower in AYAs than in younger or older patients. Cancer in AYAs has unique biologic behavior, and the spectrum of malignant diseases is different from that in other age groups, especially from that in older persons. Moreover, this age group presents with special medical, physical, psychological, and social needs. Although it was once a relative advantage to have cancer during the AYA years, patients in this age group are now behind patients in other age groups. Many factors contribute to the disappointing results: lack of specialized care, limited research on cancer in this age group, little access to and participation in clinical trials, inconsistency in treatment and follow-up care, and limited psychosocial resources and services with an AYA-specific focus.Therefore, I support the recommendation that this population should be treated in a specialized center by health professionals with the education, training, and experience necessary for providing age-appropriate medical, psychosocial, and supportive care services.Adolescence is the transitional period from childhood to adulthood. Many important changes, both physiological and psychological (i.e., autonomy, sexuality, abstract thinking, study/work) occur in this period. In Spain, adolescence is considered as those aged 12 to 18. Adolescents aged 14–18 (old adolescents) represent about 25% of the pediatric population. After the age of 18, youths can vote, drive cars, decide on health problems or maternity, and provide informed consent in clinical trials. However, healthcare in adolescents differs among Spanish institutions, going up to age 15 in some and up to age 18 in others. The incidence of serious health problems such as cancer (the leading cause of non-accidental death in AYAs) increases in adolescence (approximately 550–600 new cases of cancer per year are expected to occur in adolescents aged 14–18 in Spain), and the spectrum of cancers is different in comparison to childhood, with lymphomas, germ cell tumors, sarcomas, leukemias, and central nervous system tumors occurring most frequently. In some countries, adolescents are less likely to be included in clinical trials than children, but this does not seem to occur in Spain due to universal access to the public health system. In Spain, it is recommended that the healthcare of adolescents with cancer be performed in multidisciplinary units to ensure adequate treatment compliance and to provide psychosocial and educational support to the patients and their relatives. These units should also be responsible for the prevention of long-term effects and sequelae of therapy, promotion of a safe lifestyle, implementation of primary prophylaxis programs, and adequate transition to adult care units.The concept of young adults is difficult to establish, especially for the upper age limit. The frequency of healthcare problems is highly variable, as are the tolerability and