Georgia Southern public health professor co-leads $9.8 million research project
Project named for former research co-investigator
Georgia Southern Assistant Professor Raymona H. Lawrence, Dr.P.H., is co-leading a $9.8 million research project, which will compare different ways to transition sickle cell disease patients from pediatric care into adult care — a precarious window of treatment that, if neglected, can cause complications and even death.
Lawrence, an assistant professor of Community Health Behavior and Education in the Jiann-Ping Hsu College of Public Health, joins Dr. Ifeyinwa Osunkwo, associate professor of Clinical Medicine at the Levine Cancer Institute to lead the interdisciplinary team in their research. The project is funded by the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit organization specifically interested in research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.
“This project was selected for PCORI funding for its potential to fill an important gap in our understanding of how to improve care for older adolescents and young adults with sickle cell disease,” said Dr. Joe Selby, PCORI executive director. “It will provide useful information to help patients weigh the effectiveness of their care options.”
A crucial transition
Sickle cell disease (SCD) is especially dangerous for adolescents and young adults leaving pediatric care. Ninety-five percent of children with SCD survive to age 18, but there is a 43 percent risk of death within two years of leaving pediatrics. During the transition from a pediatric to adult medical environment, these patients may not make it to routine appointments, and subsequently miss out on treatments that will keep them healthy and prevent crises and complications. As a result, ER visits, admissions, and readmissions are frequent and often result in prolonged hospital stays — both of which can lead not only to a poor quality of life, but also an increased risk of death for the patient.
Despite the challenge, there is currently no standard way to help a transitioning SCD patient or to educate them about their disease. Caregivers for various other conditions have used structured education protocols to help with the transition from pediatric to adult care, and have tried using peer support in which patients are assigned peer mentors who can help them build the confidence and ability they need to stay healthy.
The research project will attempt to identify how best to support transitioning SCD patients by comparing the effectiveness of peer support and education protocols versus education protocols alone, and to determine the effectiveness of each approach in reducing ER visits and improving quality of life.
“Our adult stakeholders living with SCD, when asked, wish they had had the support of an older peer to help them during the turbulence of their transition to adult care,” said Osunkwo. “They felt a person already living with SCD who had successfully been through the transition process would better understand their challenges…. If we can figure out a standardized, structured way to help them it will be a win for everyone.”
A personal cause
In addition to filling an important care gap for SCD patients, the study is also a personal one for its researchers.
The research team named the project the Sickle Cell Trevor Thompson Transition UP Project (ST3P UP) in honor of their co-investigator, Trevor Thompson, Ph.D., founder and CEO of the Sickle Cell Foundation of Tennessee, who passed away from complications of SCD midway through the writing of the grant.
“Our entire project team unanimously voted for the project name in Trevor’s honor,” said Lawrence. “He lived with SCD, he understood and he believed in peer mentoring.”
Osunkwo and Lawrence’s award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. For more information about PCORI’s funding, visit www.pcori.org.