“Riley, welcome back!
How have you been feeling?”
“I’ve been feeling good.”
“Excellent!”
About 1 million Americans have inflammatory bowel disease with as many as 100,000 being
children.
“What piece of advice do you have for somebody else who is just being diagnosed?”
The disease can be especially tough for children to bear.
Young patients, who are still developing a sense of themselves both emotionally and physically,
must face an extra hurdle of having a chronic disease.
A disease that can cause persistent diarrhea, abdominal pain, intenstinal bleeding, fever
and weight loss.
“Are there any things that hurt your stomach?”
“Not a lot.”
As a result, inflammatory bowel disease can affect school attendance, the ability to play
sports and other activities, even something as simple as the willingness and confidence
to sleep over at a friend’s house.
“These diseases affect so many aspects of a child’s life.
The social things that are going on that are being impacted because of their disease, the
psychology, or their growth, and that’s so important because we only have one opportunity
to make them grow.
It’s all important.”
It’s easy for parents to feel helpless if their child has the disease but it’s also
challenging for healthcare providers to treat.
Often, the disease can differ from one patient to the next.
Due to the nature of the disease, the Pediatric Gastroenterology team, at Boys Town National
Research Hospital, takes an interdisciplinary approach to the care of their patients.
“There are things in here that teach you about what’s good to eat.”
“We’re having our dietician review the charts with us before they come in.
We’ve involved our child life specialists and by involving all the different disciplines
to treat that child, we’re really meeting all of the needs outside of their gastroenterology
needs.”
That collaboration has gone further.
In fact, it’s gone national.
The pediatric GI team is a partner in the ImproveCareNow network.
“ImproveCareNow is a national collaboration of doctors, nurses, dieticians, psychologists,
parents and patients, that are working together to improve outcomes for children with inflammatory
bowel disease, such as Crohn’s disease or ulcerative colitis.”
As of February of 2016, the network consists of 750 gastroenterologists , caring for over
24,000 children, in 36 states and England.
The concept is pretty simple.
Medical care is better when health professionals share information.
Thousands of doctor and patient visits are analyzed, the latest studies and treatments
are reviewed, and the information is shared worldwide.
The result is improved patient care.
“There are individuals out there with lots of different experience levels when it comes
to caring for these kids.
I have the opportunity to find out what is working for other institutions and be on the
cutting edge of research opportunities.”
“Traditionally, doctors have been on their own and doing the best they can, but with
collaboration, we find out how we’re doing and we learn from each other.
We share our findings and we get to benefit from different ideas.
But ImproveCareNow is not simply for providers, it’s an important resource for patients
and their families.
“They’re the first ones who decided, we need the parents on our side so that we have
a completely different perspective.
We go home and we deal with this every single day.
We go through the ins and outs, the pain, our kids crying and feeling awful.
Being a parent partner means that I’m able to work with the doctors here and really provide
a different perspective.
It’s a cohesive group effort to provide all of that care to make our own lives at
home just a little bit better.”
“It helps us to have a very family-centered approach to the care of these patients.
It empowers them and allows them to contribute back to the medical community and they’re
also obtaining good benefits from the ImproveCareNow network.”
“Take some deep breaths.”
The results of ImproveCareNow have been astounding.
Within the network, 80 percent of the patients are in remission with 50 percent sustaining
remission for at least 1 year.
93 percent have satisfactory growth.
90 percent are showing satisfactory nutrition and 95 percent are not taking steroids.
“Have you been eating ok?”
“Yeah.”
The Boys Town pediatric GI team has seen similar success firsthand.
“I think Riley has a much better standard of care now.
We’ve really been able to control his symptoms which leads to a better quality of life.
He’s been able to play sports again and get out there and swim.
He doesn’t have as much pain and when he does have pain it’s promptly taken care
of.
Now that the parents, the patient and the doctors are all involved together and the
fact that he knows what’s going on, with his own body and his own care is really important.”
“We’ve already talked about how well you are growing now.
Now that we know what’s wrong and we’re treating it.
That’s what we want.”
The mission at Boys Town National Research Hospital is to change the way America cares
for children, families and communities.
Utilizing tools such as ImproveCareNow helps the Boys Town GI team further that mission
and is another example of healthcare collaboration at Boys Town National Research Hospital.
“It’s a different way to look at care.
It’s a way to move care forward faster, and this is a way we can stay ahead and stay
with what we’re seeing across the country.”
“I’m really glad that we’re a part of ImproveCareNow because i think it validates
the quality of our care and helps us to be better physicians for these children.”
“We’re able to provide efficient care that’s comprehensive, cost-effective, and
reproducible to allow for patients to improve and have the best outcomes for the rest of
their lives.”