AHRQ Report on Transitioning from Pediatric to Adult Healthcare

We recently issued comments and recommendations to the Agency for Healthcare Research and Quality (AHRQ) in response to the draft report Transitions of Care From Pediatric to Adult Services For Children With Special Healthcare Needs. AHRQ is the lead federal agency charged with improving the safety and quality of America's health care system. This report on Transitions of Care is the third and final AHRQ survivorship report called for under the Childhood Cancer STAR Act. We’ve been engaging closely with AHRQ throughout this process, starting with the first report back in March, which focused on disparities and barriers to care.

Because children with cancer have unique and life-long health challenges, the effective transition to adult care should be specific to the complex needs of survivors. Childhood cancer survivors may experience multiple late effects, which can be serious or life-threatening, including secondary cancers.

Our comment letter to AHRQ includes these recommendations:

• The final AHRQ report should specifically acknowledge the need for healthcare professionals to actively follow the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines in their evaluation and treatment of childhood cancer survivors. The COG guidelines provide specific recommendations for the types of monitoring needed depending on the cancer treatment exposures. A recent GAO report cited a study where a majority of primary care providers reported that they had never utilized the COG guidelines.

• We also believe the AHRQ report ought to cite model, real-world programs used by many childhood cancer survivors and their families, such as the Passport for Care and SurvivorLink™. We previously provided more detailed comments to AHRQ about model programs like these, in response to the second AHRQ report issued in June, which was specifically focused on models of care.

• There should be a clear definition of “transition” to adult care, and we would encourage the definition to include the unique and complex needs of particular populations of children with special healthcare needs, such as childhood cancer survivors.

• There is clearly a need for more provider training and ongoing education for more effective care transitions for children with special healthcare needs, as well as increasing the number of providers available to these populations. The draft report stresses that more needs to be done to assist patients and families in the transition to adult care. Our comments emphasize that assistance is especially critical for the childhood cancer population.

• The report identifies research gaps for children with special healthcare needs, but we believe the review understates the need to conduct research on transition care models that are specific to childhood cancer survivors.

All three AHRQ survivorship reports (Disparities / Models / Transitions) support 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. In our formal comments on each report, we submitted 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.

We are grateful to AHRQ and its key informants and experts for the careful review of these critical issues, which provides further evidence of the significant gaps in survivorship care. We hope these reports will give the National Cancer Institute (NCI) the means of establishing best practices and definitive survivorship care standards.