Georgia is one of two states in the nation using longitudinal data as part of the Sickle Cell Data Collection Program to study trends in diagnosis, treatment, and health care utilization for patients with sickle cell disease.
Since 2004, there have been 3,509 babies born with sickle cell disease in Georgia. Nearly one in four of these children live more than one hour from any specialty sickle cell care offering daily appointments.
Currently, there are two comprehensive pediatric sickle cell disease programs in the state — in Atlanta and Augusta — with five associated pediatric outreach clinics in middle and south Georgia offering appointments monthly. There are two additional pediatric treatment centers in Macon and Savannah, with plans to increase outreach through specialized community health workers in several areas.
The situation is even more difficult for adult patients, as there are fewer providers willing to see adults with sickle cell disease.
“The data is really starting to be put into action within the state of Georgia. It was already well documented there are challenges with access to health care for individuals with sickle cell, in part because there are not enough providers who have expertise in hematology, especially as patients age into adulthood,” says Mary Hulihan, Dr.P.H., a health scientist at the Centers for Disease Control and Prevention’s Division of Blood Disorders. “But the surveillance project is able to find pockets of patients that do not have access to a nearby health care provider who knows how to take care of sickle cell disease. Those voids have been well known for a long time, but there has not been a way to necessarily quantify where those voids exist or how large of a population they impact. This data now provides real evidence of that.”
Gathering Data to Improve Lives
GHPC is the data-coordinating center for several statewide projects focused on surveillance of and health promotion for individuals with blood disorders.
With clinical and state agency partners, GHPC has built a unique, comprehensive dataset that enables a better understanding of sickle cell–related diagnoses and health care utilization since 2004 for more than 10,000 patients. Data sources include:
State newborn screening program
Clinical data from four sickle cell treatment centers in the state (Augusta University, Grady Health System, Children’s Healthcare of Atlanta, and Savannah
Administrative claims data from Georgia’s Medicaid, Children’s Health Insurance Program, and the State Health Benefit Plan
Hospital and emergency department discharge data
To date, these data have been used to determine how many people have the disease, where these patients live across Georgia, trends in morbidity and mortality, use of inpatient and emergency department health care services, and providers’ adherence to recommended clinical practices and guidelines.
“The data is being used successfully in a number of ways clinically. Georgia was able to clearly document that there is a marked increase in health care utilization and death rate in young adults with sickle cell disease,” explains James Eckman, M.D., professor emeritus at Emory University, and founder of the world’s first 24-hour comprehensive acute care sickle cell center at Grady Memorial Hospital in Atlanta. “Pediatric care is very structured. Then as patients get to be young adults, they’re on their own and they drift away from care and just use the emergency rooms, and really don’t have ongoing care and don’t have preventive care. Realization of this problem has really gotten pediatricians around the state — and around the country actually — to start focusing on the importance of transition and making sure that the youth are well prepared for that process.”
Another way the data is being used to improve care is for older adults with sickle cell disease. Once considered a childhood disease because few patients survived to adulthood, there have been great improvements in life expectancy, with the average life expectancy reaching more than 40 years. Some sickle cell patients in Georgia are actually living into their 70s and 80s.
“Using mortality data we found that the older adults with sickle cell in Georgia are not necessarily dying of complications of sickle cell disease, they are dying of the usual diseases of older age,” says Eckman, who consults with GHPC. “That is really going to be changing our care models for sickle cell patients, where we will have to focus on primary care types of activities and prevention of things like cancer and hypertension.”
Using the data to drive changes in clinical practice is possible only through engaging a multidisciplinary group of state partners.
“GHPC is very good at gathering multidisciplinary partners to discuss not only what the surveillance system looks like, but how the information from the surveillance system can be used to really improve the lives of people living with sickle cell disease,” says Hulihan. “While this is a very data-heavy project, at the end of the day, there is no reason to collect all of this data and analyze it if you are not using it to do something to really benefit the patients, the families, and the community living with sickle cell disease. By engaging with them, GHPC is able to make sure that their voices are at the table to help guide the project and that they are also able to benefit from the rich information that comes out of the project.” ●●