Despite a recent growth in pediatric palliative oncology, many children with cancer are not receiving high quality end-of-life care. The primary mission of the Palliative Care Research Program at the Institute for Cancer Outcomes and Survivorship is to ensure that all children with cancer receive high quality end-of-life care – both here in Alabama and nationally.

One of the primary aims of the program is to establish quality measures for end-of-life (EOL) care for children with cancer and leverage these quality measures to reduce disparities in EOL care. Through bereaved family interviews and a Modified Delphi Approach to expert opinion gathering, we identified 16 end-of-life quality measure concepts for children with cancer. The measures concepts fell into 4 primary domains: location of death (e.g., death in preferred location), medical intensity of EOL care (e.g., no intubation in the last 14 days), supportive care services (e.g., palliative care in the last 30 days), and hospital policies/programs (e.g. policies to eliminate visiting hour restrictions at EOL).  We are now continuing to refine the measure concepts and prepare them for real world use. Concurrently, we are examining patterns and disparities in end-of-life care using claims and administrative datasets and using interviews with bereaved families and providers to understand the underlying reasons for the disparities uncovered.

Second, we aim to improve care for children with cancer here in Alabama. To that end, we have examined patterns and disparities in end-of-life care for children with cancer treated at Children’s of Alabama and interviewed bereaved parent about their experiences, which has informed program development here at Children’s of Alabama. We have also been examining the acceptability and feasibility of early palliative care for children with high risk cancers in the Deep South. Blacks are under-represented in clinical trials; hence they do not always have access to state of the art treatment and do not have their voices represented in research, Therefore, we also serve as a site for multiple pediatric palliative care studies.