GAO Report on Access to Follow-Up Care for Survivors
“The extent of survivors’ knowledge of appropriate follow-up care varies and can have lasting effects on accessing needed care.”
As policy authors and key champions of survivorship provisions in the Childhood Cancer STAR Act, Children’s Cancer Cause is keenly interested in following up with Congress and federal agencies to ensure full implementation of this landmark legislation. The most recent survivorship action is the release of the Government Accountability Office (GAO) report on barriers to care for childhood cancer survivors - Survivors of Childhood Cancer: Factors Affecting Access to Follow-up Care (PDF).
The original STAR Act language authorized the GAO report but it was ultimately stripped from the bill. With help from Children’s Cancer Cause, the bill’s authors worked to authorize the report through the appropriations process. With this report, there is now growing government acknowledgement about the unique needs and challenges facing childhood cancer survivors, a recognition that our community will need to leverage to make sure there are improvements in access and support.
“One study examining understanding of risks for late effects among childhood cancer surveyed survivors who were 16 or older and parents of younger survivors found that a majority of survivors did not know it was likely that they would develop certain late effects. Without understanding what the potential late effects could be, survivors may be less likely to pursue appropriate follow-up care.”
To compile this report, GAO spoke with key stakeholders, analyzed peer-reviewed studies, and reviewed the status of other ongoing activities aimed at supporting access to care for survivors.
The report identifies three main barriers to survivorship care:
Affordability: Survivors are significantly more likely to have difficulty paying medical bills and to delay medical care due to affordability concerns, compared to individuals with no history of cancer.
Knowledge: Gaps in survivor knowledge and provider knowledge affect access to appropriate follow-up care for managing long-term effects. The GAO found that patients treated at a younger age are less likely to remember their treatment details and less likely to seek out follow up treatment. According to the GAO, a majority of internal medicine and primary care physicians report having never used the Children's Oncology Group's long-term follow-up care guidelines, and these providers believe their training is inadequate to meet the needs of their patients. The report also identified low prioritization of psychosocial and palliative care by providers, creating an access barrier for survivors to receive these important services.
Proximity: Some survivors have to travel long distances to reach childhood cancer survivorship clinics, which poses particular challenges for survivors with limited financial resources.
These barriers form much of our agenda at the Children’s Cancer Cause as we craft policy solutions for childhood cancer survivors.
As you can see from this Progress Report visual, the NCI has begun awarding grants for surveillance and research into survivorship. The Agency for Health Research and Quality has begun research on survivorship standards. These actions are based on the STAR Act.
But there is more work to be done. At Children’s Cancer Cause, we continue to push for a series of childhood cancer demonstration projects to develop model systems of care and portability of medical records, an important element ultimately left out of the final STAR Act.
In our own programs, we’re focused on building awareness and knowledge to give survivors clear information and guidance to make them strong and empowered self-advocates.
This fall, we’re launching new survivorship projects - under the banner of the Stewart Initiative - aimed at addressing the knowledge gap for both survivors and providers.
Components of this initiative will include:
Educational tools and resources for survivors;
New spaces to help survivors connect;
The inaugural award of our Champion’s Prize to a deserving survivorship program or institution;
New college scholarship awards for survivors; and
Policy initiatives focused on the delicate transition of care from active treatment to survivorship.