Study provides benchmark data to evaluate quality of management of sickle cell disease

The largest study to date of the use of acute care medical services by people with sickle cell disease found four of every 10 had to return to the hospital within 30 days of a previous hospitalization or go to the emergency department for treatment of pain, according to a new study funded in part by HHS' Agency for Healthcare Research and Quality.

The study, "Acute Care Utilization and Rehospitalization for Sickle Cell Disease," conducted by researchers at the Medical College of Wisconsin and the Children's Research Institute at Children's Hospital of Wisconsin, both in Milwaukee, and AHRQ, is published in the April 7 issue of JAMA.

"This study is important because it provides benchmark data to evaluate the quality of management of sickle cell disease symptoms," said AHRQ Director Carolyn M. Clancy, M.D.  "The next step is to determine why patients are being rehospitalized or seeking emergency department treatment at this rate and to make improvements in their care."

Sickle cell disease, an inherited blood disorder, most commonly causes acute, severe, recurrent painful episodes due to occlusion of blood vessels by sickle-shaped red blood cells.  People with sickle cell disease are also at increased risk for stroke and chronic problems, such as kidney and lung disease. The disease affects millions of people worldwide, including an estimated 70,000 to 100,000 persons in the United States.  African Americans are disproportionately affected. 

When the researchers analyzed acute care use by age groups, they found that 18- to 30-year-old patients had the highest rate of rehospitalizations within 30 days (41 percent). They also were more likely to go to the emergency department for treatment of pain and then be released (20 percent within 30 days).  In general, they had approximately three and a half hospital visits per year – either a rehospitalization or an emergency department visit – regardless of their insurance.  This rate is markedly higher than the two visits per year for children 10 to 17 years old with sickle cell disease. 

Regardless of age, the patients with Medicaid or other types of public insurance used acute care for sickle cell-related reasons more than privately insured and uninsured patients. Publicly insured 18- to 30-year-old patients had the highest rate – nearly five encounters per year compared with all other age groups with any other insurance, private or public.

The researchers also examined the data for the percentage of sickle cell disease patients who had to go back to the hospital or visit the emergency department within 14 days of being discharged. They found that two-thirds of the patients rehospitalized within 30 days were actually readmitted within 14 days of their previous hospital discharge.

The study was based on 21,112 sickle cell disease patients in eight states – Arizona, California, Florida, Massachusetts, Missouri, New York, South Carolina and Tennessee – who were hospitalized or treated and released from hospital emergency departments in 2005 and 2006. The state databases are part of the AHRQ-administered Healthcare Cost and Utilization Project.

"It was important for us to draw attention to the high rate of acute care utilization for people with sickle cell disease.  Armed with this knowledge, we can focus attention on the need for improved care for people with sickle cell disease," said lead study author David C. Brousseau, M.D., M.S., associate professor of pediatrics (section of Emergency Medicine) at the Medical College of Wisconsin.  He also practices at Children's Hospital of Wisconsin as a pediatric emergency specialist.


Agency for Healthcare Research & Quality


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