Children's Cancer Cause Recommends CAST Model as Strategy to Overcome Survivorship Care Barriers
We issued comments and recommendations this month to the Agency for Healthcare Research and Quality (AHRQ), in response to the draft report Models of Care that Include Primary Care for Adult Survivors of Childhood Cancer: A Realist Review. AHRQ is the lead Federal agency charged with improving the safety and quality of America's health care system. AHRQ develops knowledge, tools, and data needed to improve the health care system and help Americans, health care professionals, and policymakers make informed health decisions.
The report supports a major goal of Children's Cancer Cause - the authorization of a Center for Medicare and Medicaid (CMMI) demonstration program to develop standards of care based on COG guidelines for survivors of childhood cancer with a focus on scalable models across the United States. We submitted with our comments a Children's Cancer Cause proposal that we recommend as a strategy to overcome barriers to survivorship care: the Child and Adolescent Cancer Survivorship Transition (CAST) Model.
This Children's Cancer Cause proposal would serve children and adolescents under a Medicaid demonstration program, providing care for at least a six-month period following their active cancer treatment. A major report finding was the “lack of clarity regarding the appropriate models of survivorship care. There are multiple barriers that preclude many childhood cancer survivors from receiving specialized long-term follow up care, but there are also barriers that preclude those survivors from receiving quality survivorship care in primary care.” Thus, we believe a CMMI demonstration program would further our understanding of how best to address barriers identified in the report by evaluating real world interventions.
Our additional recommendations for how the AHRQ report can be used to identify and overcome the challenges faced by childhood cancer survivors include the following (and more):
Utilizing the Children's Oncology Group (COG) Guidelines: Further education and awareness efforts to achieve greater uptake and utilization of the COG Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers is needed, as the current COG guidelines are lengthy and complex. We ask that the final AHRQ report include the recommendation for a study about barriers and whether a shorter version of the COG guidelines is needed for easy primary care use.
Incorporating a Summary of Care and Survivorship Care Plan: The draft AHRQ report found that developing and delivering a Survivorship Care Plan (SCP) is a uniformly good practice, and we shared our specific thoughts for achieving the goal of clear communication of knowledge to both survivors and primary care providers. For instance, multiple delivery mechanisms and formats are needed to address geographic disparities, survivor population differences, and provider capacity. New tools need to be specifically adapted for use in medically underserved, lower-income communities with limited access to WiFi, home computers, and smart phones.
Recommendation of a Passport Model: The report found improved knowledge for survivors with a 'passport card' that describes their treatment history, risks, and follow-up recommendations. We recommend that the final AHRQ report should include further information about successful passport models, including mobile access to care plans.