A study by UT’s College of Nursing will seek to understand if a new approach to end-of-life care can improve the quality of life of children with terminal diseases.
When a pediatric patient has been given less than six months to live, parents are faced with two possibilities: they can continue medical treatment while providing hospice care to keep their child comfortable (concurrent hospice care) or quit all treatments and give them only hospice care, an approach known as standard hospice care.
Health providers have been federally mandated to offer concurrent care to patients under 21 since 2010, when President Barack Obama signed the Patient Protection and Affordable Care Act. However, the effectiveness of concurrent care has not been scientifically evaluated; the study by Associate Professor Lisa Lindley will be the first.
“We want to know whether or not concurrent care has an advantage over standard hospice care when it comes to overall quality of life of the pediatric patients and their families, as well as symptom management in end-of-life stages of their disease,” Lindley said.
The study will analyze data from more than 20,000 patients 21 years old and under who benefited from Medicaid and died from a disease between 2011 and 2013 in the United States.
The College of Nursing is working closely with the Advanced Computing Facility, a division of the UT–ORNL Joint Institute for Computational Sciences.
“We are managing very sensitive data provided to us by Medicaid, and they have special requirements when it comes to cybersecurity,” said Lindley. “Without the technical support of the Advanced Computing Facility, this research would not be possible,” she added.
The project received a $1.5 million grant from the National Institute of Nursing Research—part of the National Institutes of Health—and will run until May 2022.
Learn more about the Pediatric Concurrent Care Research project.
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CONTACT:
Andrea Schneibel (andrea.schneibel@utk.edu, 865-974-3993)