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Despite the remarkable treatment advances of the past three decades, cancer remains the leading cause of death by disease in young persons between the ages of one and 14 years. The American Cancer Society's Cancer Facts and Figures estimates that in 2002, 9,100 children will be newly diagnosed with cancer and 1,400 will die.

The effects of cancer and its treatment during the young, formative years of life can be lasting. Cancer takes a toll even on those who are cured. Survivors of childhood cancer and their families face a broad range of physical and psychological challenges imposed by the disease, and some will suffer its long-term effects for the rest of their lives.

Even given the problems associated with long-term effects, there have been dramatic successes in treating some childhood cancers. Certain cancers that were almost invariably fatal 40 years ago, such as some of the childhood leukemias, now have cure rates upward of 80 percent. These remarkable gains in treatment have been made within a relatively dispersed infrastructure of laboratory and clinical research, which raises the question of how much more could be achieved if a more coordinated organized effort were undertaken within a collaborative national action plan for childhood cancer.

It was to answer this question that the American Cancer Society undertook in June of 1999 to bring together representatives from all national organizations, both private and public, involved in childhood cancer. Many organizations serve the needs of children and adolescents with cancer, organizations of health care providers, researchers, and cancer survivors, as well as government agencies. However, these groups had not previously all come together to consider how they could join forces to achieve results. It was envisioned that such a meeting, under the umbrella of common interests, would enable groups to discuss the current state of treatment, how that could be improved, and how to deal with the key issues in treatment and survivorship. Together, these groups could develop a unified plan of action to improve the outcome of pediatric cancer in terms of reduced morbidity and mortality and improved quality of life. This would be a plan that everyone involved in the childhood cancer continuum—survivors, their families, their health care providers, and organizations serving them—could support and push forward. Such a coordinated approach would eliminate dupli-cation and maximize effectiveness of efforts. Background on the planning and implementation of the summit meetings is available online, as well as a listing of members of the Summit Steering Committee, which planned the meetings and invited participants.

National Summit Meetings on Childhood Cancer

In 1999 and 2000, the Ameri-can Cancer Society convened two meetings of representatives from 30 national organizations, both public and private, working in the field of childhood cancer. These representatives worked together to identify the issues that needed to be addressed in order to improve outcomes for children and ado-lescents with cancer and their families.

The group concentrated its efforts in five principal areas:

  • • Access to care and patterns of care

  • • Advocacy and professional issues

  • • Long-term care and survivorship

  • • Patient and family quality of life

  • • Research priorities

Participants identified issues for study for each of these five areas and assigned repre-sentatives from among the attendees to form a workgroup to study each area. (A list of workgroups and their members is available online.)

Reports of the Workgroups

The five designated workgroups met throughout the two summit meetings to discuss the key issues in the area they were charged to consider and to develop specific recom-mendations for meeting their charge. Members of the Summit Implementation Task Force were elected by each workgroup and charged with developing plans to implement the recommendations of the summit meetings. A key part of their work revolved around developing specific strategies for achieving their recommendations, including identifying the organizations involved in childhood cancer that might wish to be involved in meeting goals. The reports provide an overview of the issues, recommendations for addressing them, and strategies for accomplishing the recommendations.

The report of each workgroup was developed independently, and each workgroup considered issues, problems, needs, and solutions from the perspective of its topic area. Thus, the issues considered important by each workgroup may overlap with those of others. For example, research was approached both from the standpoint of advocacy for increased funding and scientific priorities. The overlap has been preserved so that the views and recommendations of each workgroup are presented.

Following each recommendation is a listing of organizations that could potentially participate in achieving the recommended action. These lists do not indicate commitments from these organizations but rather that their organizational objectives and activities suggest that they might wish to play a role.

Summary of Workgroup Recommendations

Access to Care and Patterns of Care
  • • Assure that all children and adolescents suspected of having cancer are referred initially to a pediatric cancer center and have their care coordinated by the center.

  • • Establish national standards of quality care for children and adolescents with cancer, both medical and psychosocial, as defined by healthcare professionals and patient advocates.

  • • Quantify current patterns, quality, and outcomes of all phases of childhood and adolescent cancer care.

  • • Increase participation of children and adolescents in all phases of approved clinical trials.

Advocacy and Professional Issues
  • • Ensure access to comprehensive, multi-disciplinary cancer care for children and adolescents with cancer.

  • • Assess the need for fellowships and scholarships for training in all disciplines of pediatric oncology.

  • • Accelerate the application of new therapeutic technologies to children with cancer.

Long-term Care and Survivorship
  • • Develop a comprehensive intervention strategy to provide screening and/or treatment for survivors at risk for specific late effects consisting of the following three components: (1) identification of the concerns of survivors of childhood and adolescent cancer, their families, and their health care providers about late effects; (2) development of educational materials designed to increase the knowledge of both survivors of childhood and adolescent cancer and their health care providers about these late effects; (3) evaluation of the ability of these educational materials to motivate survivors to self-advocate in order to receive care for the late effects of childhood cancer.

  • • Using evidence-based metho-dology, establish a national standard for health mainten-ance of childhood cancer survivors, including physical, neuro-cognitive, and psycho-social functioning.

  • • Develop a national pediatric cancer survivor database consisting of existing sur-vivors and providing prospec-tive enrollment.

Patient and Family Quality of Life
  • • Study the effects of childhood cancer on family function and quality of life (QOL) and develop appropriate culturally sensitive interven-tions for positive outcomes.

  • • Develop and implement QOL assessment tools that are specific for stages of disease and phases of care across the continuum of care.

  • • Define the required compo-nents of psychosocial support.

Research Priorities
  • • Develop the necessary infrastructure to support clinical research.

  • • Apply and develop efficient mechanisms for timely application of effective new treatments.

  • • Recruit, train, mentor, and retain skilled research professionals.

  • • Prioritize emerging research initiatives.

The complete National Action Plan for Childhood Cancer may be viewed and printed from CA Online at

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