The articles in this supplement represent presentations and discussions at the “International Workshop on Adolescents and Young Adults with Cancer: Towards Better Outcomes in Canada” that was held in Toronto, Ontario, March 11-13, 2010.
Article first published online: 26 APR 2011
Copyright © 2011 American Cancer Society
Supplement: Adolescents and Young Adults with Cancer: Towards Better Outcomes in Canada
Volume 117, Issue Supplement 10, pages 2239–2240, 15 May 2011
How to Cite
Barr, R., Rogers, P. and Schacter, B. (2011), Preamble. Cancer, 117: 2239–2240. doi: 10.1002/cncr.26054
The opinions or views expressed in this supplement are those of the authors of individual presentations. The summaries of discussions are endorsed by the Canadian National Task Force on Adolescent and Young Adult Cancer and do not necessarily reflect the opinions or recommendations of the journal editors, the American Cancer Society, John Wiley and Sons Inc, the C17 consortium of pediatric oncology centers, or the Canadian Partnership Against Cancer.
- Issue published online: 26 APR 2011
- Article first published online: 26 APR 2011
- Manuscript Accepted: 8 NOV 2010
- Manuscript Received: 20 SEP 2010
The Canadian national task force on adolescents and young adults (AYA) with cancer is supported by the Canadian Partnership Against Cancer. The undersigned are privileged to co-chair the task force, which is headquartered at McMaster University in Hamilton, Ontario, Canada.
The Canadian Partnership Against Cancer is an independent organization funded by the federal government to accelerate action on cancer control for all Canadians. Bringing together cancer experts, government representatives, and the Canadian Cancer Society, as well as cancer patients, survivors, and their families through the Canadian Cancer Action Network to implement the first pan-Canadian cancer control strategy, the vision is to be a driving force in achieving a focused approach that will help prevent cancer, enhance the quality of life of those affected by cancer, lessen the likelihood of dying from cancer, and increase the efficiency of cancer control in Canada.
As is increasingly being recognized, the needs of AYA with cancer are poorly met by the conventional dichotomy of the pediatric and adult health care systems. This results in delays in diagnosis, low participation rates in clinical trials, lack of age-appropriate care, concerns about social support during therapy, and long-term psychosocial and other challenges in survivorship. In Canada, we need a national strategy to address the distinctiveness of cancer in this age group, as is happening in other countries, and to recommend to decision-makers appropriate models of care to improve the outcomes and quality of life in this AYA population, as well as priorities for research (both basic and applied).
The national task force established 5 working groups to address its overall mission, vision, and objectives. The mission of the task force is to ensure that AYA Canadians with cancer and AYA survivors of cancer in childhood have prompt equitable access to the best care, and also to establish and support research that will identify how their health outcomes and health-related quality of life can be optimized. The task force envisions that current disparities of care for AYA with cancer and AYA survivors of cancer in childhood will be mitigated through advances in treatment, education, and research, respecting the distinctive circumstances and needs of this population, and enacted across all health care jurisdictions in Canada. The objectives of the task force are to develop a list of recommendations for the care of AYA with cancer and AYA survivors of cancer in childhood, together with strategies for the implementation of these recommendations, and to identify research priorities for these populations. Members of the working groups include health professionals from a variety of disciplines, together with survivors and advocates.
Within the 4-year timeline of the task force's initial plans, it was decided to host an international workshop in Toronto from March 11 through 13, 2010. The purposes of this gathering of approximately 100 invited participants, 25 of whom were cancer survivors, were:
- 1To review current information about cancer care for AYA in Canada with respect to their referral, diagnosis, treatment, and psychosocial support.
- 2To examine existing knowledge about patterns and transition models of the long-term follow-up of survivors of malignant disease in childhood when they join the AYA age group.
- 3To explore possible lines of communication between pediatric and adult health care providers and other influential parties to promote continuing improvement in the health care provided to AYA with cancer and AYA survivors of cancer in childhood.
- 4To establish recommendations for the provision of health care to AYA with cancer and to survivors of cancer in childhood.
- 5To identify research priorities related to cancer and its sequelae in AYA.
- 6To investigate mechanisms to ensure the sustainability of the efforts to improve the care of AYA with cancer.
We anticipated that these discussions would complement and strengthen the activities of the working groups that would also be the subjects of debate during the workshop. On the first day, the program began with a series of plenary presentations followed by a roundtable discussion with adult health care providers and then a series of breakout groups that addressed 10 topics. These were: models of active care and promotion of access; determination of human resources and targeted training of health care professionals; increasing clinical trial accrual, communication between pediatric and medical oncologists; critical issues in transition and survivorship; holistic approaches to health care; integrating the efforts of health care providers, survivors, and advocates; linkage to the international community; overcoming barriers to recommendations and the development of a strategy; palliative and end-of-life care; and outcomes and metrics.
The second day was spent on presentations and discussions of the breakout groups, whereas the final day focused on research priorities and the development of emerging themes from the workshop.
The final product of this exercise was to be the development of a limited number of priority recommendations, akin to the process adopted by the Progress Review Group in the United States that was cohosted by the National Cancer Institute and LIVESTRONG (formerly the Lance Armstrong Foundation). The themes that emerged were: 1) advocacy and awareness, 2) active therapy and supportive care, 3) palliation and symptom management, 4) psychosocial needs, 5) survivorship, and 6) research and metrics. The recommendations deriving from these themes will be matched with a strategy for implementation to ensure that the outcome of the workshop does not become merely an academic exercise.
It is our firm belief that the deliberations at the workshop and its attendant activities will be informative and useful for colleagues beyond Canada as the network of communication in AYA oncology continues to grow.
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.