Experts Provide Guidance on How To Measure and Improve Quality of End-of-Life Care for Children With Cancer – News
While there are many quality measures for end-of-life care for adults with cancer, there are no such measures for children.
There is currently no consensus on what quality end-of-life care for children with cancer looks like, or how it should be measured and delivered. However, researchers recently led a panel of experts to help fill this gap. In a study published online in CANCER, a peer-reviewed journal of the American Cancer Society, the panel approved 16 measures addressing various aspects of care that are important to children with cancer and their families.
“Measuring the quality of care is an essential part of ensuring quality end-of-life care for all patients. While there are many quality measures for end-of-life care for adults with cancer, there are zero for children with cancer, ”said lead author Emily Johnston, MD, assistant professor of hematology / oncology in the Department of Pediatrics at the University of Alabama at Birmingham.
Johnston and her colleagues selected a panel of individuals with expertise in pediatric and adult oncology, pediatric palliative care, social work, nursing and hospice. The researchers provided the panel with information on 20 proposed measures derived from adult measures and interviews with survivors whose child died of cancer.
After scoring each measure and participating in discussions, the panelists endorsed a series of 16 measures covering four different aspects of care: avoiding intensive medical care at the end of life; helping families reach the preferred place of death for their child; promoting hospital policies and procedures for end-of-life care; and expanding support services for the child, as well as for parents and siblings.
“This is the first study to identify quality measures for end-of-life care for children with cancer. Some measures are similar to those for adults, such as avoiding intubation at the end of life; but others are new, such as estimating the needs of siblings at the end of life, ”said Johnston. “It is therefore essential that we have quality measures specific to children with cancer.”
The team noted that the measures need to be fine-tuned and validated in survivors before they can be used as a tool to standardize care.
Once validated, these measures can be useful for determining the quality of end-of-life care offered by different programs and for identifying differences.
“For example, they will allow us to determine whether Hispanic and Black children with cancer receive as high-quality end-of-life care as non-Hispanic white children,” said Johnston. “Once we identify groups at risk of poor end-of-life care, we can develop targeted interventions to improve their care.”
An accompanying editorial notes that the results of the study may also have implications for improving end-of-life care for adults. “This is an exciting time when more research will emerge to advance end-of-life care in a way that can better serve all patients and families,” the authors wrote.