MONDAY, Dec. 10 (HealthDay News) — There are major gaps in medical care for sickle cell disease patients as they move from childhood to adulthood, new research finds.
Sickle cell disease is an inherited blood disorder that affects between 90,000 and 100,000 Americans, many of them African-Americans. Those with the disease produce abnormal, sickle-shaped cells that can’t move easily through blood vessels to deliver adequate oxygen to tissues and organs. It was formerly considered a childhood disease because patients rarely lived beyond their teens. But improved treatments mean that many of these patients live well into adulthood.
Although life expectancy has been extended for these patients, there are new challenges to help ensure that the growing number of adults with sickle cell disease receive adequate care to manage their disease over the long term, according to research that was to be presented Monday at the American Society of Hematology annual meeting, in Atlanta.
The studies show that these patients tend to rely more on emergency rooms to manage acute problems (such as infection, pain and acute chest syndrome) related to their disease as they become adults.
These patients are also hospitalized more frequently than the general population, resulting in significantly higher overall costs, including improving continuity of care and patient education.
The researchers also offer evidence to encourage public health officials to continue to develop and refine important efforts to help sickle cell disease patients as they move from child to adult with 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,” American Society of Hematology President-Elect Dr. Janis Abkowitz, of the University of Washington School of Medicine in Seattle, said in a society news release.
“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,” Abkowitz added.
Research presented at medical meetings should be viewed as preliminary until published in a peer-reviewed journal.
More information
The March of Dimes has more about sickle cell disease.