Canada enjoys a publicly funded health care and cancer control system that provides an average life expectancy at birth of more than 80 years within a fairly homogeneous pattern of health care outcomes across a complex federal, provincial, and territorial funding and care delivery system.1 However, disparities are evident within Canada—health outcomes become more favorable east to west, north to south, and rural or remote to urban, and certain population groups, for example, visible minorities and First Nations, Inuit, and Métis, do not enjoy health outcomes as favorable as other Canadians. Adolescent and young adult (AYA) cancer patients compose a group whose special needs, particularly with regard to survivorship, deserve attention. Although numerically a small group, AYA cancer patients often do not receive the coordinated, integrated, and supportive care befitting the challenges of cancer and its treatment. Furthermore, developmental, educational, and life-choice issues are associated with the teen and young adult years.
Canada is a large country (approximately 10 million square kilometers) with a small population (34 million; population density 3.41/km2). According to 2009 estimates, Canada's gross domestic product per capita adjusted for purchasing power parity was $39,098, with a health care expenditure per person of $3900 (both in Canadian dollars). Average life expectancy at birth is almost 81 years. The Human Development Index (a composite score reflecting life expectancy at birth, literacy, and standard of living) is 0.966, and the Gini coefficient, reflective of wealth distribution within a population, is 0.321 after taxes. Caucasians represent 73.8% of the population, followed by Asians (21%), Aboriginals, First Nations, Inuits, and Métis combined (5%), and Hispanic and African ethnicities (<1%). Visible minorities number 5.3 million today, but they are projected to rise to between 11.4 and 14.4 million by 2031. With higher birth rates and younger populations, visible minority groups are expected to grow at 8 times the rate of the rest of the Canadian population during the next 2 decades.2
Health for Canadians is provided through a related federal-provincial-territorial system. The federal government has a mandate to improve and maintain the health of Canadians. This mandate is governed by the Canada Health Act with its 5 pillars of public administration, comprehensiveness, universality, portability, and accessibility. It is enacted through certain federal entities (Fig. 1): Health Canada, with responsibility for the Canada Health Act; the Health Transfer, guardianship and regulation of health products, First Nations and Inuit Health services, and health information; the Canadian Institutes for Health Research, federally funded health research; and the Public Health Agency of Canada, which is responsible for population health assessment, surveillance, disease and injury prevention, health protection, and emergency preparedness and response. The responsibility and accountability for the organization, management, delivery, quality, safety, and performance for the acute, chronic, long-term, and palliative care and end of life needs of Canadians is provided by provincial/territorial (P/T) health systems, supported by the federal Canadian Health Transfer ($41.8 billion Canadian dollars during 10 years, to be renegotiated during 2013 to 2014), which accounts for approximately 15% of P/T health care costs. The remaining 85% is paid by the provinces and territories from their public tax revenues.
Cancer control services are provided within the acute care system in all provinces and territories; however, dedicated entities exist in parallel in many provinces and territories to provide services specific to diagnosis, treatment, and support of cancer patients. Comprehensiveness, design, and delivery of cancer control programs vary between provinces and territories, and these programs vary in their distribution between acute care and cancer-dedicated systems (Fig. 2). The Canadian Partnership Against Cancer Corporation (CPAC)3 is a federally funded, population-based cancer control program established as a nongovernmental organization (NGO) (“arms length” of the federal government), accountable through the federal/provincial/territorial relationship. It functions as a stakeholder partnership that enhances and facilitates planning, coordination, performance and quality at an interprovincial and territorial level for the purpose of improving cancer control outcomes in Canada. Pediatric cancer is largely addressed through tertiary pediatric hospital services, networked with the community to provide appropriate, ambulatory care. Adult cancer care is provided through the acute care system and dedicated cancer facilities and is networked with community and/or primary care wherein many nonacute nonspecialized treatment needs are met. Adolescents and young adult survivors of cancer have their needs met within both the pediatric and adult cancer systems, although the system is not designed, staffed, or customized to meet their unique needs. As a result, AYA cancer patients experience challenges to their care and survivorship because access, expertise, support, and guidance are not sufficient.
AYA cancer patients are a numerically small group amounting to approximately 2000 new cases per year (all age total, 171,000), experiences 16,000 potential years of life lost (1.5% of total potential years), has 320 deaths per year (0.43% of total cancer deaths, an age-standardized incidence rate of 320 males [M] - 360 females [F] per million people; 462 M - 364 F per million, all ages), an age-standardized incidence rate of 320 to 360 cases per million, an age-standardized mortality rate of 58 to 48 per million, an estimated 5-year survival rate of 83%, and an estimated improvement in observed 5-year survival of >5% in the periods from 1992 to 1995 and 2001 to 2004.4
Treatment performance and survival outcomes for AYA cancer patients are not out of line with those achieved within the pediatric and adult populations; however, the rate of improvement during the last decade has been lower for AYA cancer patients. It is very evident that levels of expertise and support necessary for this group (access, process of care, coordination, expertise, rehabilitation, recognition and support for age, development, and other cancer-related issues) have not been as high in the areas of development, focus, and attention as they have been in younger (pediatric) or older (adult) age groups.
There is clear recognition that under the aegis of the Canada Health Act and a cancer control plan for Canadians (CPAC), the disparities experienced by AYA patients require attention. These needs and gaps will require consideration of 1) the elements of comprehensive population-based cancer control, which include primary prevention, early detection, diagnosis and staging, treatment, survivorship support, palliation, end of life care, and primary, tertiary, and community care models of care coordination, and 2) integration within and across facilities and health environments. To meet the breadth of needs across the cancer care spectrum (disease detection and treatment, education, employment, and support for optimal societal engagement), multiple constituencies (including government, NGO, educator, employer, patient, and public) will need to engage with one another to provide both the capacity and the environment needed to enhance AYA patient survivorship.
The initiative to improve care and outcomes for AYA oncology patients is not unique to Canada; it is important to other westernized high-resource nations (eg, USA, European, Australasian, and Scandinavian countries). The emergence of this initiative probably reflects 1) the medical-health care provider perspective related to the transition of care from a pediatric to an adult care setting (particularly the identification and management of late effects) and 2) the patient-survivor perspective reflecting the unique needs of the AYA patient population with respect to identity, peer environment, customization of care, and quality of life. Given the emergence of patient-survivor organizations, newsletters, web sites, and blogs, for example, pursuit of these directions without a health system perspective may be construed as advocacy or lobbying.
The establishment of a forum in which all perspectives—provider, consumer, health system or services, including policy, socioeconomic and public perspectives—can be explored, synthesized, and prioritized will move the discussion from political advocacy to actual system change. Competing health priorities must be recognized.
Furthermore, the involvement of international colleagues will offer cultural and contextual perspectives on the provision of AYA oncology care, broaden the discussion, and offer the potential for innovative and/or alternative solutions to improve care and outcomes. Forums of this nature that lead to broadly supported positions, considered in the context of national cancer control programs (eg, Canadian Partnership Against Cancer ), may be useful models for system-level changes that will achieve patient outcomes of importance.