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
These patients are also hospitalized more frequently than the
general population, resulting in significantly higher overall
costs, including improving continuity of care and patient
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
Research presented at medical meetings should be viewed as
preliminary until published in a peer-reviewed journal.
The March of Dimes has more about
sickle cell disease.
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