The Pediatric End-of-Life (PedEOL) Care Group is centered at the College of Nursing, University of Tennessee, Knoxville. A team science approach guides the scholarship with several interdisciplinary teams operating at a distance from multiple institutions with research focused on understanding the End-of-Life and Palliative Care (EOLPC) needs of children and adolescents with serious, advanced illness.
The team (PI: Lisa Lindley) is funded by multiple awards from the National Institutes of Health National Institute of Nursing Research (NINR). NIH funding has allowed the group to expand its inquiry of pediatric concurrent hospice care using a comprehensive national Medicaid database.
Given the critical lack of knowledge about pediatric hospice and concurrent care, this research group will significantly increase the overall impact within the original scope of award. Our research provides the first-ever scientific investigation of these needs using sophisticated Big Data analytics.
This line of investigation is expected to ultimately improve the care and outcomes for children, adolescents, and their families at end of life.
Our mission and goals reflect the importance of quality care at end of life for children and adolescents:
- Conduct research related to pediatric end-of-life care.
- The PedEOL Care group research will provide evidence about child and family outcomes including quality of care by using sophisticated Big Data analytics.
- Federal regulations in the Affordable Care Act (ACA) section 2302 require States to provide Medicaid coverage for eligible children to receive Concurrent Care for Children.
- Since the ACA enactment in 2010, states varied in their implementation of Concurrent Care for Children with some implementing as recently as 2017.
- Little or no evidence has been provided to support the effectiveness of this federally-mandated program.
- As health services researchers that pediatric patients are underserved.
- Health disparities may arise in access to care, quality of care, and care coordination as well as in healthcare coverage.
- Data analytics are critical to building evidence to support these vulnerable populations.
- Policymakers will benefit from the availability of the evidence from this research.
- Children are not the same as adults but may benefit from pediatric end-of-life care.
- Children receiving end-of-life care may represent a smaller population than in adults, but pediatric end-of-life care is important.
- Hospice care, concurrent care with hospice care, and palliative care are all important end-of-life services for children.
IN THE FUTURE
- Children and their families suffering through unimaginable diagnoses may be served through improved access and quality of specialized pediatric end-of-life care.
- More research is necessary to evaluate models of care for children.
Lisa Lindley, Ph.D., RN, FPCN, FAAN Principal Investigator and Nightingale Endowed Faculty Fellow, is an Associate Professor in the College of Nursing at the University of Tennessee, Knoxville. Dr. Lindley is a child health services and policy researcher. Her research focuses on health care delivery systems and policy interventions that promote accessible, high-quality end-of-life care for children with serious illness and their families. Dr. Lindley has expertise in advanced statistical techniques, data management, and claims-based data.
Pamela S. Hinds, Ph.D., RN, FAAN, Director, Nursing Research and Quality Outcomes, The Children’s Research Institute, Children’s National. Dr. Hinds is currently the Director of the Department of Nursing Research and Quality Outcomes, Associate Director of the Center for Clinical Translational Science at Children’s National Medical Center in Washington, D.C., and Professor of Pediatrics at George Washington University in Washington, D. C. She is an adjunct professor for the University of Pennsylvania, School of Nursing, Johns Hopkins University, School of Nursing, and the University of Maryland, College of Nursing.
Jennifer W. Mack, MD, MP, Associate Chief, Population Sciences for Pediatric Hematology/Oncology, Senior Physician, and Associate Professor in Pediatrics, Harvard Medical School; Dana-Farber Cancer Institute. Dr. Mack received her medical degree from Harvard Medical School in 1998. She subsequently completed her residency in Pediatrics and her fellowship in Pediatric Hematology Oncology and Pediatric Palliative Care at Children’s Hospital Boston and Dana-Farber Cancer Institute. In 2005, Dr. Mack received a master’s in Public Health from the Harvard School of Public Health. She is an attending physician in the Jimmy Fund Clinic and at Children’s Hospital Boston. Her research interests are in parent-physician and patient-physician communication, health care quality, and palliative care.
Jessica Keim-Malpass, Ph.D., RN, CPNP-AC, FAAN, Associate Professor of Nursing, Associate Professor of Pediatrics, School of Medicine Translational Health Research Institute, University of Virginia. Dr. Keim-Malpass is a translational nurse scientist that works at the intersection of biotechnology and family-centered approaches within the domains of predictive analytics, innovative nurse-driven models of care, and health/regulatory policy. She has been supported through several grant mechanisms to answer these questions and most recently as a Translational Health Institute of Virginia (THRIV) Scholar, NIH R21, and AHRQ R01.
Melanie Cozad, Ph.D., Assistant Professor, COPH Health Services Research & Administration, University of Nebraska Medical Center. Dr. Cozad received her Bachelor of Science degree in economics at the United States Naval Academy with honors and distinction (2002), an MBA from Cameron University in Lawton, Oklahoma (2007), and a MA and Ph.D. in economics from the University of Tennessee-Knoxville (2010, 2012). She served as an Officer in the United States Marine Corps from May 2002-June 2007. Her research focuses on quantifying the behavioral responses of individuals, firms, and states to health and environmental policies.
Radion Svynarenko, Ph.D., Assistant Research Professor, UT College of Nursing, Knoxville, Tennessee. Dr. Svynarenko has a Ph.D. in Family Sciences, University of Kentucky, and a Ph.D. in Psychology, V.N. Karazin Kharkiv National University, Ukraine. His interests combine both research and data analysis in Family Sciences. Dr. Svynarenko has been an investigator in cancer research, managing and analyzing Big Data sets, publishing in peer reviewed journals, and teaching Family Sciences classes.
Deb A. Kirkland, Dr.PH, RN Postdoctoral Health Policy Research Fellow, UT College of Nursing, Knoxville, Tennessee. Dr. Kirkland has a Dr.PH in Public Health from the University of Tennessee. Dr. Kirkland is investigating broadband expansion policies and telehealth in the Appalachian region with a special focus on rural communities.
Heather A. Davis, Ph.D., Postdoctoral Health Policy Research Fellow, UT College of Nursing, Knoxville, Tennessee. Dr. Davis has a Ph.D. in Human Geography from the University of Tennessee. Her interests combine health geographies, particularly in coastal and rural communities, blue health, end-of-life care, older women’s health and health inequalities, and creative methodologies.