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Awareness and Advocacy for Adolescents and Young Adults With Cancer* Devon McGoldrick, MPH1; Pamela Gordon, BSW1; Myrna Whiteson, MBE, BA2; Heidi Adams, BA1; Paul Rogers, MB, ChB, MBA3; and Simon Sutcliffe, BSc, MD4
Increasing the awareness of the clinical and psychosocial needs that are particular to adolescents and young adults (AYA) was a top priority, as was strengthening advocacy efforts to empower and support this group. To date, AYA advocates had some success in generating public awareness and building a solid clinical justification for increased focus on this population. It had been established that the economic burden of their mortality was significant, their cancers were unusual, their medical care was often inadequate, and their outcomes for many cancers had not improved in the past 3 decades. As the awareness and advocacy campaign continued to grow and evolve across the globe, it was an important goal to integrate the efforts of all stakeholders to ensure that it progressed with a single, consensual, focused message identifying a common priority for action. By coordinating the efforts of the scientific, medical, and advocacy communities, it was possible to amplify their separate efforts and activities and more efficiently achieve C 2011 American Cancer Society. large-scale change in the world of AYA oncology. Cancer 2011;117(10 suppl):2311–5. V KEYWORDS: awareness, advocacy, adolescents, young adults, cancer.
In recent years, more attention and focus has been directed toward improving the survival rates and quality of life of ado-
lescents and young adults (AYA) with cancer.1-3 Unlike pediatric and adult cancer survivor populations, this cohort of survivors between the ages of 15 and 39 has not seen significant improvement in 5-year survival rates in several decades.4,5 Recently, stakeholders came together at the Canadian Partnership Against Cancer-C 17 International Workshop on AYA Oncology to identify and put forth an agenda aimed at improving health outcomes for AYA affected by cancer in Canada. Increasing the awareness of the clinical and psychosocial needs that are particular to AYA emerged as a top priority, as did strengthening advocacy efforts to empower and support this group.3,6 This important work needs to be done simultaneously within and among the realms of all stakeholders, including the AYA cancer patient population, family and community support systems, health professionals, policy makers, and the general population.7 In this study, we will identify the key audiences to target, discuss a plan for disseminating a clear message, and highlight successful models that have been implemented to further increase awareness and strengthen advocacy efforts.
BUILDING AWARENESS Building awareness is composed of several steps. The first is to clarify the message: What are the key issues or facts that will spur change? The second is to identify the key stakeholders: Who must your message reach to impact health outcomes? The third is to disseminate the information: How can integrating efforts of stakeholders amplify awareness across the spectrum of AYA patient needs? Clarify the Message: What Are the Key Issues or Facts That Will Spur Change? Although AYA comprise a small proportion of all cancer patients, the personal, societal, and socioeconomic impact of cancer in this age group around the world is disproportionately great. The global agenda should include campaigns that Corresponding author: Devon McGoldrick, MPH, LiveStrong, MPH, 2201 E. Sixth Street, Austin, TX 78702; Fax: (512) 236-8482;
[email protected] 1 LiveStrong, Austin, Texas; 2Teenage Cancer Trust, London, United Kingdom; 3BC Children’s Hospital, Vancouver, British Columbia, Canada; 4Canadian Partnership Against Cancer, Toronto, Ontario, Canada
The articles in this supplement represent presentations and discussions at the ‘‘International Workshop on Adolescents and Young Adults with Cancer: Toward Better Outcomes in Canada’’ that was held in Toronto, Ontario, March 11-13, 2010. *Workshop on Adolescents and Young Adults with Cancer: Toward Better Outcomes in Canada, Supplement to Cancer. DOI: 10.1002/cncr.26055, Received: September 20, 2010; Revised: November 18, 2010; Accepted: November 19, 2010, Published online April 27, 2011 in Wiley Online Library (wileyonlinelibrary.com)
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highlight 3 important dimensions of diagnosis, treatment, and care: biomedical differences associated with a differing spectrum of cancers in this age group; psychosocial differences associated with the transition from pediatric to adult life; and sociobehavioral differences associated with the passage through the developmental stages of adolescence and young adulthood. Without a clear direction and shared vision among advocates, the healthcare system may continue to justify adhering to protocols that do not distinguish the clinical care and support needs of this population, continuing poorer outcomes in clinical, quality of life, and satisfaction domains. While their actual mortality rates and 5-year survival rates compare quite favorably with those in pediatric and adult cancer, the lack of improvement in survival rates of this AYA group and the fact that cancer is the leading diseaserelated cause of death in this population justifies increased awareness and advocacy efforts. Clarifying the reasons why AYA have seen less improvement in survival rates than children and adults is a key goal of this evolving movement. The AYA population remains understudied and research questions to explain survival disparities remain unanswered. Although outcome differences between children and young adults, and between older and younger adults with some types of cancers have been documented (examples include acute lymphoblastic leukemia [ALL] and sarcomas), an understanding of why these differences exist is needed.3 Also, due to developmental changes, cancer biology, and patient tolerance for chemotherapy change in late adolescence and adulthood compared with childhood, affecting both the ability to deliver effective therapy and the likelihood of response. A better understanding of kinetics and toxicity in this age group is needed to ensure the most appropriate treatment protocols. It is also worth noting that in the United States, the most costly cancers per death in 2010, measured by the present value of lifetime earnings (PVLE) lost due to cancer deaths, occurred in working-age individuals.8 These costs are just a fraction of the economic impact of cancer occurring in AYAs. We must also consider the costs to both the healthcare system and the workforce due to morbidity, late effects, and possible additional cancers later in life. The prevention and management of these issues over time could lessen the collective impact of AYA cancer on the community. Definitions of the AYA cohort have varied in research but, generally, care of this population is sorted by 3 primary determining factors: Human developmental stage, cancer type (adult or pediatric), and chronological age.2 Developmentally, what typifies AYA are a perceived
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invulnerability and a growing desire to be autonomous. These traits can stifle or complicate communications between patients and physicians, parents or significant others, and may take the patient out of the loop of selfdetermination and planning for future care and followup. Feelings of invincibility common in this age group may contribute to delays in diagnosis that lead to these patients presenting with more advanced disease.1 Postdiagnosis, the AYA’s desire to be autonomous and in control may manifest in lack of adherence to treatment or foregoing proscribed follow-up care.2,5 Grouping by pathology is also problematic. AYA patients with ‘‘pediatric’’ tumor types may be sorted automatically into pediatric oncology care, which may not address their unique developmental or psychosocial needs adequately. Care of AYA patients diagnosed with rare cancers uncommon to either pediatric or adult oncology may experience arbitrary referrals based on many variables, resulting in inconsistent treatment regimens.2 Although AYA patients with rare cancers may experience concentrated resources and clinical expertise in established cancer centers, their psychosocial needs cannot always be met to the same extent, which can affect health outcomes negatively.4 Mortality data are stratified by age, and the groups that have seen the lowest improvement in rates of survival are those between the ages of 15 and 45 years. Grouping all AYA into this range can simplify things strategically, creating an all-encompassing target cohort around which to rally. However, when implementing plans of action, subgroups may need to be identified and evaluated, and their needs prioritized. Assuming homogeneity among this population can blur interpretative distinctions that can impact research, clinical trials, and evidence-based reporting adversely. These differentiating factors can serve to clarify the distinctive burden of the AYA cancer patient. Integrating key points into strong, consistent messaging serves to justify focused efforts to improve AYA care and outcomes. Identify Stakeholders: To Whom Do We Need to Get the Message? Potential audiences for the message relating to cancer in AYA lie in 4 categories of stakeholders, for whom there needs to be a salient and accessible message to increase awareness. These stakeholders include the patient and his or her peers; their family and general support community, including colleagues, educators, and employers; health professionals, including family doctors, specialists, oncologists, and others who will treat physical and emotional
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needs medically; and the society and culture at large, including policy-making bodies and legislators.1 Additionally, these 4 groups can be differentiated across 3 phases of the cancer experience: the healthy AYA, before diagnosis; the AYA survivor in treatment; and the AYA survivor after treatment. Informing the medical community could have the most immediate impact and thus providers should be considered a priority audience.9 Knowledgeable providers may avert delays in diagnosis, facilitate more targeted treatment, and build a clinical expertise that fills the existing chasm between the established specialties of pediatric and adult oncology. The next logical step is to target healthcare providers, survivors, and advocates simultaneously, to integrate their efforts to sustain positive treatment outcomes and to facilitate a transition into empowered care after treatment and in lifelong follow up. Once these stakeholders are informed and aware of the in-treatment and after-treatment needs of the AYA cancer survivor, the focus and priority could shift. Efforts should be channeled toward raising the awareness of all AYA in several categories. The first is empowering AYA to take responsibility for their own health and wellness, encouraging regular checkups and screening, as well as educating them on lifestyle choices and behaviors, focusing on management of exposures to known carcinogens as well as environmental and occupational health hazards. For cancer survivors, the next category is lifelong surveillance for cancer recurrence, side effects of therapy, and late effects, including second cancers and other chronic conditions. A final category is education on hereditary and acquired characteristics that relate to the management of predisposition, fertility, and heritable consequences of cancer and its treatment. How Best to Spread the Word: Integrating Efforts of Healthcare Providers, Survivors, and Advocates Within each of the 4 categories of stakeholders, in each phase of treatment, there are people who act as gatekeepers, influencers, and decision makers. A good communication plan identifies these players and uses them to disseminate the information more effectively.9 The potential benefits of encouraging the collaboration of all stakeholders to increase awareness and strengthen advocacy include a reduction in redundancy and overlapping of services, the conservation of human and financial resources, a multidisciplinary coordination of care, and a population of survivors who are empowered and engaged advocates with a lifelong commitment to addressing AYA issues.
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These benefits are countered by very real and contentious issues, including variations in funding models among governments, insurers and philanthropic organizations; the difference between models of care (the familyfocused model in pediatric oncology and the diseasefocused model in adult oncology); ingrained values and beliefs in cultures and society; physical space constraints; and no centralized clearinghouse for information.9,10 Because of the larger numbers of people and groups involved in this type of effort, rather than trying to reconcile all of their needs and objectives, it makes sense to focus on AYA-specific concerns that all stakeholders have in common. These include but are not limited to: knowledge transfer and awareness; risk reduction; early detection; treatment; support; sustained recovery; fertility; equitable access to appropriate vocational, educational, and psychosocial resources; and priority in funding for clinical trials and other research. One successful model of integrating efforts of different stakeholders around common issues is that built around breast cancer. Many survivors, advocacy organizations, researchers, practitioners, and corporate partners with widely varying agendas united successfully to create awareness, establish a large-scale funding presence, achieve widespread awareness of screening guidelines, and build brand recognition around the color pink.9 There are 2 separate but complementary strategies to consider when planning a campaign to increase awareness around the issues relevant to AYA. The first, driven by both institutions and systems, is more ‘‘top-down,’’, acknowledging an overall need for systemic knowledge transfer. This strategy includes the creation and implementation of a national action plan; coalition-building among key national players; extraction of evidence-based best practices; and an outreach initiative to engage additional stakeholders. The second strategy is more ‘‘bottom-up’’, built upon the efforts of survivors and grassroots advocates. This strategy includes the replication of successful community programs; creating experiences and platforms in which stakeholders can exchange information and best practices with each other; and peer-to-peer support and communitybuilding among AYA patients and survivors.9
STRENGTHENING ADVOCACY Advocacy and awareness are logically intertwined. As awareness increases, it creates a need for advocacy to generate and sustain support, which then provides a vehicle for delivering more education and information. Ideally, through this exchange, advocates keep people aware of the
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evolving priorities and the most current advances in AYA oncology. Strengthening advocacy can happen simultaneously on several levels. At the most basic level, the individual AYA patient becomes a self-advocate when he or she feels empowered and able to seek out information and communicate with their healthcare team as an equal partner. Most who fall within this group demonstrate capacity and the desire to be involved in their treatment decisions, and they must be supported in their self-advocacy. The movement grows outward from the personal to the community, with the development of mechanisms and channels that allow like-minded individuals to connect with and support each other. From there, as groups of individuals connect with a common cause, and build power and influence, advocacy efforts can rise to the regional and national level, uniting and fortifying the efforts of family, community, and societal members interested in change. At the beginning of this decade, advocacy campaigns built specifically around the issues of AYA cancer survivors were few and far between. Fortunately, since then, the movement has gained momentum internationally and has become more organized, public, and professional.6 One such success story is rooted in the advocacy and education efforts of a national charity in the United Kingdom known as the Teenage Cancer Trust (TCT). In the early 1990s, TCT advocates were influential in the creation of the first adolescent cancer unit in Middlesex Hospital in London. TCT’s approach has been multifaceted, seeking to inform public, patients, families, professionals and politicians of the unique needs of AYA with cancer. Their message has remained focused and they have used celebrities for both fundraising and awareness purposes to achieve change in the approach to delivery of services. Their success can be measured by the change reflected in the National Health Service National Institute for Health and Clinical Excellence Guidance (2005) Improving Outcomes in Children and Young People with Cancer,10 which states, ‘‘The principle that underpins the guidance is that of age-appropriate, safe and effective services as locally as possible, not local services as safely as possible.’’ Furthermore, they advise on the place of care and the teams who should deliver that care, advocating for services that are responsive to the specific needs of young people. Today, there are 17 TCT units operating in the United Kingdom supporting approximately half of the country’s teens diagnosed with cancer. The ultimate goal is to open one at every regional cancer center. TCT units are specialized units for AYA with cancer that bring together an age-appropriate
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physical space, a medical team of AYA cancer specialists, and psychosocial support from a specialized multidisciplinary team.9 These units serve as learning models to improve training and research in the field. TCT was also instrumental in advocating for the establishment of a Chair in Teenage and Young Adult Cancer Medicine.6 A different model appeared in North America in 2006, when the National Cancer Institute partnered with the Lance Armstrong Foundation to hold the Adolescent and Young Adult Oncology (AYAO) Progress Review Group (PRG).11 The PRG developed a national agenda for AYAO, composed of recommendations addressing gaps in both knowledge and care for these patients. Subsequent to the PRG, the Lance Armstrong Foundation fostered the development of the LIVESTRONG Young Adult Alliance (the Alliance); a coalition of organizations formed as an implementation body for the PRG recommendations. The Alliance is composed of advocates from small and large NGOs, healthcare providers from academic and community centers, cancer researchers, and government representatives. Considerable progress has been facilitated by having all stakeholders base their advocacy efforts on a common resource, which promotes the dissemination of a clear message shaped by contributions from the scientific, medical and advocacy communities. To date, there are no dedicated physical units for the AYA population in the United States. However, based on the PRG recommendations, several institutions have developed ‘‘virtual’’ AYA programs. These programs use technology and other means to connect multidisciplinary teams, medical and other experts, as well as patients to providers and other patients.9,12 Both of these models may inspire Canadian efforts to gain funding and support for similar or hybrid solutions tailored to other regions where need exists. Ideally, programs around the world, while differing in foundations of origin, should evolve to ensure that AYA have access to expert medical and supportive care, a distinct physical space that is age-appropriate and patient-friendly, access to evidence-based knowledge about their specific cancer and treatment, broad access to clinical trials, and the use of technology to enhance communication among all stakeholders across various disciplines and levels of patient interaction.9,12
MOVING FORWARD To date, AYA advocates have had some success in generating public awareness and building a solid clinical Cancer
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justification for increased focus on this population. It has been established that the economic burden of their morbidity and mortality is significant, their cancers are unusual, their medical care is often inadequate, and their outcomes for many cancers have not improved in the last 3 decades. The Canadian Partnership Against Cancer-C 17workshop on AYA oncology brought together experts in the scientific, medical and advocacy communities from all over the world to define and prioritize objectives to continue to improve health outcomes for the AYA population with cancer in Canada. It is a critical time of growth, and as this AYA advocacy and awareness campaign evolves, it is important to build on commonalities among a multisectored constituency and express a single, consensual, focused message identifying a common priority for action. Champions must be identified among all stakeholder groups and network together to reinforce and carry the message forward effectively. These champions can represent AYA needs within campaigns for all cancers to help raise the profile of this population broadly, as well as keep the various stakeholder groups united and engaged together to amplify their separate efforts and activities Finally, there needs to be consideration for the sustainability of advocacy efforts and clinical models of active care. Large, comprehensive advocacy groups and diseasespecific advocacy groups should be encouraged to designate funds to address the needs of the AYA population. Government agencies should be urged to ensure systemic integration of AYA into funding categories to effect largescale change in research and clinical care. As Margaret Mead once said, ‘‘A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.’’ By raising awareness of the distinctive needs and issues of AYA with cancer, and bringing all stakeholders together to combine their advocacy efforts into a consistent, powerful call to action, the world of AYA oncology will truly be changed. In fact, it’s the only way it ever will be.
FUNDING SOURCES Funding for the national task force on adolescents and young adults with cancer has been made possible by a financial contribution from Health Canada through the Canadian Partnership Against Cancer. Funding for the workshop was provided by C17; the Advisory Board of the Institute for Cancer Research at the Canadian Institutes for Health Research (CIHR); the Public
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Health Agency of Canada; the Ontario Institute for Cancer Research; the Meetings, Planning and Dissemination Grants program of the CIHR; the Terry Fox Research Institute; LIVESTRONG, formerly the Lance Armstrong Foundation; the Canadian Cancer Society Research Institute; Young Adult Cancer Canada; Hope and Cope; and the Comprehensive Cancer Centre at the Hospital for Sick Children, Toronto, in addition to the support provided by the Canadian Partnership Against Cancer to the Task Force on adolescents and young adults with cancer.
CONFLICT OF INTEREST DISCLOSURES The authors made no disclosures.
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