Study finds clinical decision support systems help physicians better manage patients’ sickle cell disease

Patients with sickle cell disease are at significant risk of accumulating excess iron in the body, caused by repeated blood transfusions. Regular monitoring of iron levels in these patients is important, yet can sometimes be overlooked in the primary care setting. A new University of Florida study finds that a clinical decision support system can help physicians improve management of transfusional iron overload in their patients. The findings appear in the Journal of the American Board of Family Medicine.

“This trial provides evidence that decision support may be a useful strategy to help primary care physicians better manage patients with rare diseases, such as sickle cell disease, thereby reducing the need for management by specialists,” said lead investigator Arch G. Mainous III, Ph.D., a professor and chair of the department of health services research, management and policy at the UF College of Public Health and Health Professions.

Blood transfusions are used routinely to treat patients with sickle cell disease who have severe anemia, yet multiple transfusions can put them at risk for transfusional iron overload. Previous research suggests that as many as one-third of adults with sickle cell disease have iron overload, which can damage the liver, heart and pancreas. When high iron levels are identified, patients are treated with chelation therapy to remove heavy metals from the blood.

Most individuals with sickle cell disease, particularly adults, receive care for their disease from primary care physicians, not specialists, Mainous said. However, a recent survey of family physicians found that only 20 percent felt comfortable treating patients with sickle cell disease. The UF study sought to examine whether a medical record-based clinical decision support system may help improve disease management.

The intervention was conducted at three family medicine clinics at the University of Florida. Three general internal medicine clinics served as the control. Researchers evaluated sickle cell disease management at all the practices for six months before implementing a clinical decision support system at the family medicine clinics. The system offered provider education on transfusional iron overload, as well as an alert in the patient’s electronic medical record reminding physicians to order an iron test if the patient had received a transfusion in the past year.

Among the practices that received the clinical decision support system, the proportion of patients with sickle cell disease who received an order for an iron test increased by 44 percent over the six-month intervention. Among the control clinics, there was no change in the number of orders.

“The intervention was particularly effective in helping primary care physicians begin to address an often unrecognized, but important, quality of care issue in adult patients with sickle cell disease,” Mainous said. “However, checking for transfusional iron overload is only the first step. Managing overload with chelation therapy is the next step and will be incorporated into this clinical decision support system for future research on process and patient outcomes.”