Opportunities and challenges of establishing a nationwide strategy for adolescents and young adults in Canada with cancer†
Impressions from the Toronto workshop
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.
Currently, there is priority to address the complex needs of the adolescent and young adult (AYA) cancer population. At a workshop in Toronto, the Canadian healthcare community brought together a broad range of stakeholders to discuss the opportunities and challenges of developing a nationwide strategy for AYA cancer patients. Summarized here is an overview of the workshop objectives and considerations coming from the conference participants relative to opportunities, challenges, and future directions. It is concluded that the Canadian healthcare and advocacy communities are well-positioned to have a major impact and assume a leadership role in AYA cancer care. Cancer 2011;117(10 suppl):2351–4. © 2011 American Cancer Society..
The Toronto Workshop on Adolescents and Young Adults with Cancer: Towards Better Outcomes in Canada, reflects a progression of efforts to define and address the many issues associated with the care and follow-up for a population of cancer patients increasingly recognized as unique and underserved.1 For more than a decade, there has been an enhanced focus on the complex needs of the adolescent and young adult (AYA) cancer population. This population has been the subject of conferences and strategic planning efforts throughout the world which have identified the need for new and innovative approaches to improve care and long-term outcomes for these patients. This increased attention has resulted in establishment of a limited number of institutionally based programs, ranging in scope from consultative services to dedicated clinical care units.2
The Canadian healthcare community is to be commended for organizing the Toronto workshop which brought together the full range of stakeholders from Canada and international experts, including advocates, AYA survivors, pediatric/adult healthcare providers, and researchers. Through this conference, it was possible to continue the dialogue surrounding the myriad of topics that need to be considered, and to define a starting point for a coordinated nationwide Canadian effort to translate previous and current discussions into a plan of action for AYA cancer patients.
Recognizing the needs of the AYA cancer patients and opportunities within Canada, the organizers defined an ambitious list of objectives for the Toronto workshop. Briefly summarized below are impressions from the workshop objectives, which included review of current information regarding AYA cancer patients, examination of transition models, interactions between pediatric and adult healthcare professionals, establishment of recommendations for health care, research priorities, advocacy, and issues of sustainability of efforts/programs.
REVIEW CURRENT INFORMATION IN CANADA WITH RESPECT TO REFERRAL, DIAGNOSIS, TREATMENT, AND PSYCHOSOCIAL SUPPORT
Previous efforts to describe the Canadian AYA patient population and existing support services provide an initial foundation for direction and informed discussion. However, it is clear that there is a need to markedly expand these efforts, and to further define and characterize the population of interest and services available. These efforts should not only result in an inventory of those services which currently exist, but also document the quality and impact of these activities across Canada. Identification of existing “gaps in knowledge” for each of the theme-related topics identified during this workshop (ie, active therapy and models of care, awareness and advocacy, palliative care and symptom management, psychosocial issues, outcomes and metrics, and survivorship) will facilitate this effort.
To ensure high quality information, collection of these data should be carried out within a research context, using well-developed survey design and rigorous methods. The plan to be developed should include strategies to exploit existing Canadian data sources and linkage strategies, drawing upon health statistics and health services databases, augmented by surveys designed to provide information not currently available. The data gathering plan should include specific metrics for assessing the quality of the information, and those resources required to ensure that the information is timely and properly interpreted.
Adopting such an approach will result in a comprehensive assessment of the breadth and depth of current AYA-related treatment, support services and physical environments available, and provide a sufficient evidence-base on which to establish the blue-print on which to implement the changes required for building programs and structure within the Canadian healthcare system for this population cohort.
EXAMINE EXISTING PATTERNS AND TRANSITION MODELS OF LONG-TERM FOLLOW-UP OF PEDIATRIC CANCER PATIENTS WHEN THEY ATTAIN ADULTHOOD
With the impressively high survival rates among patients diagnosed with cancer within the pediatric and adolescent age ranges, there will be an ongoing need to consider those who will be transitioning from pediatric- to adult-based care. Information presented at the workshop indicates that, while many pediatric oncology centers in Canada have programs in cancer survivorship, the majority of these do not include formal pathways specifically designed to effectively transition the care of patients reaching adulthood. Thus, the current information-base is insufficient to understand the number and characteristics of pediatric cancer survivors entering the transition period, nor the actual patterns of transition taking place across the country. The Canadian healthcare system accumulates healthcare usage data which may be used to define the existing transition patterns of those AYA patients who move from pediatric- to adult-based care. Once these data have been analyzed, it will be possible to model future needs of this survivor population and their impact on healthcare usage.
Understanding existing and potential methods of communication for transition of care between pediatric and adult providers represents a considerable challenge. To inform and facilitate transition of care, it will be necessary to consider the variety of combinations of communications between pediatric healthcare providers, where primary cancer treatment and survivorship care takes place, and the multiple potential adult-based healthcare providers that may be required to care for patients experiencing and/or at risk for treatment-related late effects. In contrast to the information-gathering process to describe existing services, patient population and transition patterns, where quantitative data can be collected and analyzed, documenting lines of communication will likely be best conducted using qualitative research methods. While generalizability may be more limited due to the disparate number of healthcare authorities and facilities within Canada, qualitative information will describe the range of communication patterns (nonexistent, adversarial, collegial) that occur among the various members of the healthcare team.
ESTABLISH RECOMMENDATIONS FOR THE PROVISION OF HEALTH CARE TO AYA WITH CANCER, AND TO SURVIVORS OF CANCER AS CHILDREN OR AYA
Patients diagnosed and treated as adolescents or young adults are a remarkably heterogeneous population when considering the spectrum of cancers that occur within this age group, and the spectrum of physical and psychosocial development. This heterogeneity imposes a real challenge to the establishment of recommendations for treatment and follow-up if the objective is to provide recommendations that are sufficiently specific to aid in the care of an individual patient. While some have advocated the need for a new subspecialty (ie, AYA oncology), it is likely that consensus recommendations for referral and cancer treatment of the AYA patient will need to be developed as a collaboration between the pediatric and medical oncology communities within Canada. Discussion among the participants in the breakout sessions at the Toronto workshop identified a considerable number of options and issues to consider when developing recommendations. It was acknowledged that a 1 model system for all would likely not be implementable across all provincial healthcare authorities, but the principles of care and follow-up could be defined. Clearly, the existing long-term follow-up guidelines for survivors of pediatric and adolescent cancer (eg, the Children's Oncology Group guidelines3) reflect a strong base on which to build recommendations for AYA survivors being cared for within the Canadian healthcare system. Recognizing the unique attributes of this system and the broad geographic distribution of the Canadian population, there is potential benefit in looking internationally at other models for the care and follow-up of the AYA cancer patient. Critical evaluation of approaches and outcomes implemented in various international settings should help to inform development of potential models for Canada.
IDENTIFY RESEARCH PRIORITIES
The spectrum of potential research topics among the AYA population is large and diverse. The heterogeneity of this population referred to previously, coupled with the size of the AYA population within Canada, will represent challenges to research. Identification of priorities should be based on input from the broadest possible base, comprising all parties with a vested interest in the topic of AYA cancer. Opportunities for research that is both innovative and translatable to patient care fall within several areas including, but not restricted to, genetic etiology, translational biology, clinical therapeutic trials and, among AYA survivors, cancer prevention, quality of life, and health promotion. Once research priorities are established, the feasibility for conducting the high priority studies may often require national, as well as, international collaborations to address some research questions in a scientifically rigorous manner.
INVESTIGATE MECHANISMS TO ENSURE SUSTAINABILITY OF THE EFFORTS TO IMPROVE THE CARE OF AYA WITH CANCER
As efforts continue and progress is made in improving the care of the AYA cancer patient through structured programs, it is essential to do so with the long-term goal of being able to sustain those activities that are proven most effective. Regardless of the structure of a future Canada-wide AYA initiative (ie, bricks and mortar, virtual, or a combination of both), the objective of sustainability must be an important component of the business plan. As pointed out by Simon Sutcliffe during the Toronto workshop, as this plan develops and is implemented, it is important not to structure services/programs through integration within existing entities whose future support or viability is tenuous. Sustainability will obviously be dependent upon support of governmental bodies, philanthropic entities, and the healthcare providers involved in delivering and administrating the programs. Well-defined benchmarks of success will need to be defined, achievement of which will aid in supporting the case for sustaining those efforts that improve the care of the AYA cancer population.
At the conclusion of the Toronto workshop, it was evident that the Canadian healthcare and advocacy communities are well-positioned to have a major impact and assume a leadership role in AYA cancer care. The efforts of the organizers of this highly informative and successful workshop resulted in an important starting point. However, their work in bringing together this diverse group of individuals will only have impact if there is timely and decisive follow-up. This will require committed leadership by individuals who not only have the vision, but are willing to devote the time and energy that will be required to address the challenges identified and seize the opportunities reflected in the care and follow-up of the AYA patient with cancer.
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 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.