Research unveiling key gaps in continuity of care for sickle cell patients transitioning from pediatric to adult care were presented recently during the 54th Annual Meeting of the American Society of Hematology (ASH).
Sickle cell disease (SCD) is an inherited, chronic blood disorder affecting between 90,000 and 100,000 Americans. Instead of producing healthy red blood cells, individuals with the disease produce abnormal, sickle-shaped cells that cannot easily move through blood vessels and deliver adequate oxygen to the body’s tissues and organs. Blocked blood flow as a result of an accumulation of these sickled cells can cause severe pain and organ damage and increase a patient’s risk for infection.
While SCD was formerly considered a childhood disease because patients rarely lived beyond their teens, thanks to improvements in treatment, an increasing number of SCD patients are living well into adulthood. Although effective treatments are extending life expectancy for these patients, doctors and patients face new challenges to help ensure that the growing adult population of patients with SCD can receive adequate care to manage their disease over the long term.
New research presented at the 2012 ASH Annual Meeting examines a number of factors surrounding care for SCD patients; researchers conclude that SCD patients tend to rely more on emergency departments to manage acute events (e.g., infection, pain, and acute chest syndrome) related to their disease as they transition from childhood to adulthood. Data confirms that these patients are also hospitalized more frequently than the general population, resulting in significantly higher overall costs and burden on the health-care system. The studies identify opportunities to improve the health system, including improving continuity of patient care and education for patients. They also provide evidence to encourage the public health community to continue to develop and refine critical initiatives that will help these patients as they transition from pediatric to adult public and private health insurance coverage.
“While we have made many advances in the treatment of sickle cell disease, this research reveals the important challenge we as physicians continue to face in ensuring that the medical system supports timely access to needed preventive and disease management protocols for our patients,” said ASH President-Elect Janis Abkowitz, MD of the University of Washington School of Medicine in Seattle. “For health-care providers, it is important to consider how we can address the needs of patients transitioning into adulthood and avoid unnecessary trips to the emergency department – steps that will improve the health-care system for everyone.”
Highlights of the SCD-related studies presented during the 2012 ASH Annual Meeting include:
1. Age-Related Emergency Department Reliance and Healthcare Resource Utilization in Patients with Sickle Cell Disease; Presenting Author: Morey A. Blinder, MD
Background: Study investigated age-related patterns of emergency department reliance (EDR) and associated health-care costs by reviewing Medicaid data from more than 3,200 pediatric SCD patients, including those transitioning from pediatric to adult care.
Results: Average ED visits/quarter increased from 0.76 to 2.29 between age 15 and 24, reaching a peak of 2.9 at age 36. Patients were more likely to have high EDR during the post-transition period, incurring higher inpatient and ED costs.
Conclusion: Since advancements in care now allow for SCD patients to live well into adulthood, the study highlights clear areas for improvement to aid in the move to adult care, reduce reliance on ED services, and deliver better long-term support.
2. Outpatient Visits, Hospitalizations and Emergency Department Visits Among Patients with Sickle Cell Disease on Medicaid: Trends in 14 USA States, 2006-2007; Presenting Author: Benjamin Ansa, MD
Background: Study examined rates of hospitalizations, outpatient visits (OPV), and emergency department visits (EDV) among 19,168 pediatric and adult patients.
Results: The majority of cases of SCD patients identified were between the ages of 11 and 20 (27.4%), with the highest numbers of cases reported from Florida, Georgia, and Louisiana.
• Patients between 11 and 30 years were the highest utilizers of medical care, with a combined rate of 80/1000 yearly visits for hospital, OPV, and EDV.
• The rate of African Americans (AA) with SCD on Medicaid was highest (1.1/1000) in Louisiana and Mississippi, and lowest in Texas (0.5/1000).
• While patients ages 1-10 had the most OPV (15.1 per 1,000 annual
visits), hospitalization and EDV rates were highest among patients between ages 21 and 30 (8.9 and 22.9 per 1,000 visits yearly, respectively).
Conclusion: The study finds that use of public health services changes significantly as children transition into adulthood and utilize outpatient care less and emergency care more. Education programs directed to the emergency department as the most common site of care for young adults with SCD may be valuable in promoting disease management and prevention. More research effort is needed to understand the variation between states in the enrollment of SCD patients in the Medicaid program.
3. Acute Healthcare Utilization for Patients with Sickle Cell Disease within a Community-based Hospital System; Presenting Author: Hung Tran, MD
Background: Retrospective chart review conducted among SCD patients at a single center, examining 14- and 30-day readmissions and emergency department (ED) encounters (563 total acute care events).
Results: Acute cases in the 21-30 age group had the highest rate of 14- and 30-day readmissions (41% and 51%, respectively), along with the highest number of acute care encounters per patient annually. Of the few patients who had 11 or more events in a two-year period, the majority (67%) were 21-30 years old.
Conclusion: The study confirms previous studies of the age-related reliance on emergency care for patients with SCD and finds that when treated in the ED, more than half of these patients will return within 30 days. For young adult patients, there is a clear need to understand the reasons for the high rates of acute events and short-term re-hospitalizations to help better manage disease and reduce the
financial burden of care.
For the complete ASH annual meeting program and abstracts, visit www.hematology.org/2012abstracts.
 Centers for Disease Control and Prevention, “Sickle Cell Disease Fact Sheet,” http://www.cdc.gov/ncbddd/sicklecell/data.html (Accessed November 2012).