• A set of minimal standards for designation as a late effects clinic should be endorsed and adopted by relevant bodies such as Children’s Oncology Group (COG), the American Society of Pediatric Hematology/Oncology, the American Academy of Pediatrics, the American Society of Clinical Oncology, the American College of Surgeon’s Commission on Cancer, and the NCI in its requirements for approval for comprehensive cancer centers.

  • COG members and other institutions treating children with cancer should ensure that a comprehensive, multidisciplinary system of follow-up care is in place to serve the needs of patients and their families discharged from their care.

  • State comprehensive cancer control plans being developed and implemented with CDC support should include provisions to ensure appropriate follow-up care for cancer survivors and their families.

  • Grant programs of HRSA (e.g., Special Projects of Regional and National Significance [SPRANS]) should support demonstration programs to test alternative delivery systems (e.g., telemedicine, outreach programs) to ensure that the needs of different populations are met (e.g., rural residents or those living far from specialized late-effects clinics, ethnic and minority groups). Needed also are evaluations to determine which models of care confer benefits in terms of preventing or ameliorating late effects and improving quality of life, and which models survivors and their families prefer.

Recommendation 3 Improve awareness of late effects and their implications to long-term health among childhood cancer survivors and their families.

  • Clinicians providing pediatric cancer care should provide survivors and their families written information regarding the specific nature of their cancer and its treatment, the risks of late effects, and a plan (and, when appropriate, referrals) for follow-up. Discussions of late effects should begin with diagnosis.

  • Public and private sponsors of health education (e.g., NCI, ACS) should launch informational campaigns and provide support to survivorship groups that have effective outreach programs.

Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)

Recommendation 5.2 Advance evidence-based practices using dissemination and demonstration projects and create a public-private partnership to guide their implementation.

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