For families facing the end-of-life of a loved one with pediatric cancer, robust quality measures to benchmark what parents value most in their child’s medical care do not currently exist. A new study from Yale Cancer Center helps identify what parents prioritize for their children with advanced cancer, including alleviating the child’s symptoms and honoring the family’s goals and wishes. Researchers say the findings may help establish a patient-centered agenda for quality measurement and improvement in children with advanced, incurable cancer. The study titled, "Parent Priorities in End-of-Life Care for Children with Cancer,” was published in JAMA Network Open on May 15.
“We engaged parents who lost a child to cancer in a unique survey approach, known as a discrete choice experiment,” said Prasanna Ananth, MD, MPH, first author of the paper and associate professor of pediatrics (hematology/oncology) at Yale School of Medicine. “This study allowed us to determine what aspects of end-of-life care quality are most important to measure from the critical perspective of bereaved parents from across the United States.”
In all, 61 bereaved parents completed the discrete choice questionnaire. Parents were presented with 28 patient-centered quality measures, four measures at a time, and participants were asked to select the most and least important measures within each set. Results revealed that parents who were surveyed prioritize end-of-life quality measures focused on symptom management and goal-aligned care (clinical care that honors patient- and family-identified goals and values, while respecting any treatment limitations). Quality measures assessing the parent’s own psychosocial support and their child’s hospital resource use were deemed less important.
“Parents highly prioritized measuring quality of symptom relief and the extent to which their family’s goals were met by the health care team,” said Ananth, who is a pediatric oncologist at Smilow Cancer Hospital. “Currently, end-of-life quality measurement is not routine in childhood cancer care. In adults with cancer, however, several quality measures are commonly used, many of which focus on limiting hospital use near the end of life. We found that bereft parents did not find this aspect of quality measurement to be particularly important, when compared with optimizing symptom management or meeting a family’s goals and wishes,” said Ananth.
The top quality measures identified by the study included having a child’s symptoms treated well, feeling that a child’s needs are heard by the health care team, and having a goal-concordant end-of-life experience. Avoiding chemotherapy, providing psychosocial support for parents, and avoiding the intensive care unit were deemed the lowest priority quality measures for parents surveyed.
The study was conducted from January to June 2021. Yale co-authors of the study included Meghan Lindsay, MPH; Sarah McCollum, MPH; Veronika Shabanova, PhD; Sophia de Oliveira; Xiaomei Ma, PhD; and Cary P. Gross, MD. Joanne Wolfe, MD, MPH, professor of pediatrics at Harvard Medical School, was the senior author of the paper.
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- Cary Gross, MDProfessor of Medicine (General Medicine) and of Epidemiology (Chronic Diseases); Founder and Director, Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, Yale School of Medicine; Director, Adult Primary Care Center, Quality Improvement; Director, National Clinician Scholars Program; Associate Editor, Department of Medicine