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The red blood cell goes from being round and donut-shaped
to forming these jagged, misshapen, weird kind of
shapes, which under the microscope can look like a
sickle, hence the name.
These sickle cells then can become very easily caught in
our tiny blood vessels.
It basically forms, let's call it, an occlusion that gets
clotted up or jammed in a blood vessel.
This then cuts off the flow of oxygenated blood to tissues
that are in need.
I, as an individual with the disease, I experience that cut
off in oxygenated blood as severe pain, because the
tissue is being starved, in essence,
and it becomes damaged.
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NICHQ is a quality improvement organization
that's based in Boston.
NICHQ has a program called the Working to Improve Sickle Cell
Health Care program, which is comprised of two HRSA-funded
programs, the Sickle Cell Treatment Demonstration
Project and the Sickle Cell Disease
Newborn Screening Program.
The focus is really to improve the quality of care for
individuals for sickle cell disease and
trait across the lifespan.
We know that, from the literature, that there are
several gaps in the quality of care the individuals with
sickle cell disease receive.
And so we know that effective strategies are not being
widely used.
We also know that there's differential access to care
for individuals with sickle cell disease.
It's our hope is that with this project, that we'll begin
to be able to narrow that gap in the care
that's being delivered.
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One of the things that makes the condition so challenging
is that the pain that we have, as persons with sickle cell
disease, it's a pain that no one can
see, no one can observe.
There's no blood test that a physician can do that says, oh
yes, you probably are in pain, or yes, this is how much pain
you're having.
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We need to make sure that our patients, no matter where they
go, whether it's the infusion center, whether it's the Adult
ED, whether it's the Pediatric Emergency Department, that
those patients are able to receive first-rate care, quick
care, get pain under control in as fast a time as possible,
to really be able to make a difference in alleviating the
suffering of our patients.
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The reason that we transitioned from pediatric to
adult care for children with sickle cell disease is because
in sickle cell disease, 20 years ago the major area of
concern was infant mortality.
The average lifespan for people with sickle cell
disease was 20 years old, at the time.
And the highest mortality rate was during infancy, and it was
from sepsis.
And the wonderful thing about it is that we have now
improved care, with the use of penicillin and newborn
screening and childhood immunizations, and so most of
the children are living into adulthood.
And now the new area of vulnerability and morbidity
and mortality in children with sickle cell disease is the
transition from pediatric to adult care.
So our young adults are the ones who now have a very high
mortality and morbidity rate.
A lot of young adults use the Emergency Room as
their point of care.
And so what we're doing is every one who is seen in the
Emergency room within the last month, our transition nurse
case manager is calling them to make sure they have a
follow-up appointment with their hematologist.
If they don't have an hematologist, she is offering
to make appointments at our clinic with them.
And so far, she has captured six young adults who were lost
to follow-up.
In other words, they didn't have an adult hematologist,
they didn't have a primary care physician, and they were
out of the health care loop.
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Since this project has begun, we have standardized the way
that newborn screening results are entered for both sickle
cell disease and sickle cell trait.
And the other big initiative is that we are currently
uploading educational materials for both the primary
care provider and the parents, so that they can be printed
out and given to the parents at the time that the diagnosis
is received.
One of the most powerful features of this collaborative
is that we are sharing results and ideas in real time.
Generally in research, it will take you 18 months to maybe 5
years to start a project, implement it, analyze the
results, and publish it.
By doing a collaborative such as this, we are sharing ideas,
learning what has worked and not worked across the country.
Maybe others have already tried this idea, and what
we're doing is we're getting to better, more innovative
ideas that work, faster.
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Providers from across the country are able to talk about
their efforts and what's working and what's not, and
successes and failures to help inform others' efforts.
And I think it's going to go a long way to not only talking
about what each of us is doing, but what we're all
doing together and what that impact is on the patients
we're serving.
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