The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), has awarded a 6-year, $4.4 million grant to St. Jude Children’s Research Hospital and collaborators to improve the use of prescribed medication by sickle cell patients.
The new Sickle Cell Disease Implementation Program, which comprises a team from St. Jude, the University of Memphis, Methodist University Hospital, Baptist Memorial Hospital, Vanderbilt University and the Sickle Cell Foundation of Tennessee, will jointly develop, assess and integrate mobile health application to manage hydroxyurea treatments in the patient community.
“While we have made good progress using hydroxyurea to help children and younger adults look after their disease, much remains to be done to slow the progress of sickle cell as older teenagers transition to adult life,” said Jane Hankins, M.D., an associate member of the St. Jude Department of Hematology and Principal Investigator of the project. “Our goal with this project is to use a mobile health application to help 15-year-old and older patients in the Memphis and wider areas manage sickle cell. This is crucial since at this time in their lives they often have less access to healthcare providers and comprehensive sickle cell programs which greatly impacts their quality of life.”
The funding from the NIH will be used to identify barriers to medical care and any constraints on the proper use of hydroxyurea by patients in the Memphis and greater Memphis areas. In addition to helping design, test and implement the new mobile health app to improve medication access and adherence, the team will also make the findings of the study available nationwide to encourage best practice and wider use of hydroxyurea in the national sickle cell community.
“We want to have an impact across the country,” Hankins said. “Our starting point for this mobile health project is its potential impact on the patients we want to reach,” said Hankins. “The widespread availability of mobile phones in our patient community makes for an ideal communication channel to deliver messages that will help patients take hydroxyurea in a better way. It will also provide important other information on the disease and tips on how to stay healthy.”
A pilot project conducted at St. Jude demonstrated that text messages improved adherence rates for hydroxyurea by more than 15%.
Hydroxyurea can greatly reduce some of the complications of sickle cell disease by enhancing the production of fetal hemoglobin, a healthy form of the essential oxygen-carrying molecule in red blood cells. St. Jude Children’s Research Hospital has pioneered the use of hydroxyurea as an effective treatment for sickle cell disease in children and younger adults. However some studies have shown that only 15-35 percent of sickle cell patients adequately follow their prescribed medication schedules.
Sickle cell disease often affects vulnerable, low-income populations. In the United States, more than 100,000 people are affected, mostly African Americans, many from disadvantaged backgrounds. In the Mid-South region alone sickle cell disease affects approximately 2,000 individuals. If not treated effectively sickle cell disease can lead to organ failure and early death.
Hankins was recently appointed leader of the Adult Comprehensive Sickle Cell Disease Center at Methodist University Hospital, a joint initiative between St. Jude and Methodist University Hospital to enhance evidence-based clinical care for older sickle cell patients.
A research team led by Lisa Klesges, Ph.D., professor at the University of Memphis, will develop the app and measure the population impact of its implementation.
“We have assembled a multidisciplinary team of statisticians, epidemiologists and informaticians who will involve patients in the design of the new app and work closely with all collaborators to optimize the design and measure its use within the community system of care,” Klesges said.
In addition, a team led by William Cooper, M.D., M.P.H., professor at Vanderbilt University, will use administrative healthcare insurance data from Medicare, TennCare, and a commercial payer to map existing use of hydroxyurea in the Memphis area. “We are interested in understanding patterns of hydroxyurea use by age and providing a baseline for the findings of the clinical study,” Cooper said.
Patients will be recruited and participate at four clinical centers – St. Jude, Methodist University Hospital, Baptist Memorial Hospital, and from the Memphis private practice of Curtis Owens, M.D.
The team will measure the impact of the program and collect all of the data needed to assess the app’s effectiveness. The goal is to look at how many patients have adopted the technology and assess its reach, cost effectiveness and longer-term sustainability.
The desired outcome is to share the findings nationwide to make sure that sickle cell patients in this vulnerable age group have the best possible access to the most effective drug treatments.
Re-Aiming at Hydroxyurea Adherence for Sickle Cell with mHealth is supported by funding from the National Institutes of Health (grant no. 1U01HL133996-01).
St. Jude has been researching sickle cell disease since the hospital opened in 1962. The first research grant ever received by the hospital was for the study of sickle cell disease. In 1983, a St. Jude patient was the first in the world to be cured of sickle cell anemia through a stem cell/bone marrow transplant. St. Jude cares for approximately 900 pediatric sickle cell patients each year, 40 of whom transition to adult care annually. Learn more about treatment for sickle cell disease at St. Jude.
St. Jude Children's Research Hospital
St. Jude Children's Research Hospital is leading the way the world understands, treats and cures childhood cancer and other life-threatening diseases. It is the only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. Treatments developed at St. Jude have helped push the overall childhood cancer survival rate from 20 percent to 80 percent since the hospital opened more than 50 years ago. St. Jude freely shares the breakthroughs it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands more children. Families never receive a bill from St. Jude for treatment, travel, housing and food — because all a family should worry about is helping their child live. To learn more, visit stjude.org or follow St. Jude on social media at @stjuderesearch.