1. What is the decision or change (e.g., clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
Currently there are more than 500,000 childhood cancer survivors in the United States. Yet, there is no standard of care for the transition of these individuals from the oncologist to pediatrician or primary care physician even though they face significant health challenges and even premature death. More than 95% of childhood cancer survivors will have a significant health related issue by the time they are 45 years of age; these health-related issues are side-effects of either the cancer or more commonly, the result of its treatment. One third will suffer severe and chronic side effects.
2. Why are you struggling with this issue?
Experts and stakeholders agree regarding the systemic problems that plague survivors over their lifetime – insurance and access barriers, lack of primary care knowledge about how to treat survivors, the complexity of health conditions experienced by pediatric survivors, and lack of patient knowledge about their status and individual needs as a childhood cancer survivor. Survivors do not routinely receive explicit guidance – a survivorship care plan – from oncologists on how to treat cancer survivors. Often there is no formal transition from the oncologist to a primary care physician, and there is minimal care coordination where follow up occurs. Establishing a standard of care for childhood cancer survivors as they transition to primary care will minimize existing wide variation in care and improve outcomes for survivors.
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
AHRQ should review its recent Congressionally authorized reports on childhood cancer survivorship care and issue a new report containing best practices for survivorship care. Further, AHRQ should work with the Center for Medicare and Medicaid Innovation (CMMI) on testing these practices through demonstration programs. The 2021 AHRQ report, Disparities and Barriers to Pediatric Cancer Survivorship Care, acknowledged research limitations, namely, that barriers exist and that little has changed over the past 20 years. Moreover, the AHRQ report noted that a grant or demonstration opportunity that addressed barriers is critically important. Finally, the AHRQ report found that we struggle with widespread implementation and adoption even where we do have effective strategies. AHRQ released a second report, Models of Care that Include Primary Care for Adult Survivors of Childhood Cancer: A Realist Review in 2022. The report again highlighted the limitations around quality survivorship care delivery, stating “there are also barriers that preclude . . .survivors from receiving quality survivorship care in primary care.” Specifically, the 2022 report notes that real world evidence documenting the limits in the quality of the care adult survivors of childhood cancer receive. The report also found a lack of formal evaluations of outcome data for the models of care, particularly mortality. This situation will be addressed when a comprehensive demonstration program, such as one administered by the CMMI, evaluates the above issues in a pilot project to develop a standard of care. We believe a CMMI demonstration program would further our understanding of how best to address the barriers identified in the AHRQ reports by evaluating real world interventions.
4. When do you need the evidence report?
Friday, 12/01/2023
5. What will you do with the evidence report?
An evidence report that identifies mechanisms to implement real world solutions and develop practice guidelines will allow us to develop a standard of care around transitions and survivorship care for children and adolescents with cancer. Relevant agencies can use this report to inform policy and develop pilot programs.
Optional Information About You
What is your role or perspective? Professional Society
If you are you making a suggestion on behalf of an organization, please state the name of the organization. Children's Cancer Cause
May we contact you if we have questions about your nomination? Yes
