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A few years ago, Preeti Sharma, M.D., Pediatric Pulmonologist at Children’s Health℠ and Assistant Professor of Pediatrics at UT Southwestern, met with a teenager who had been told by doctors that she had just a few years left to live. Her cystic fibrosis was advanced, and the doctors believed they’d done everything they could.
Unsatisfied, her parents got a second opinion from Dr. Sharma and her team – including a pulmonologist, gastroenterologist, dietitian and respiratory therapist – at the Claude Prestidge Cystic Fibrosis Center at Children’s Health in Dallas.
“We all gathered in the same room, met with the family, and looked at her care from all angles,” says Dr. Sharma, who is a pulmonologist at Children’s Health and Co-Director of the Center. “We decided to admit her and work together to understand what was being missed and what could be done differently.”
This level of collaboration is at the heart of our approach to CF care. Here are three ways a collaborative model can improve processes, tailor treatment plans and help kids with CF thrive.
Cystic fibrosis is more than just a pulmonary condition. Patients also face gastrointestinal and endocrine complications. That’s why our Cystic Fibrosis Center brings together experts across specialties, as well as psychologists, nutritionists and respiratory therapists who specialize in CF.
“We’re in the same place at the same time,” Dr. Sharma says. “It's not the endocrinologist sending me a note about my patient. It's me sitting right next to her, in clinic, so we can have a real-time conversation about how things are going and what we need to do differently.”
This collaborative approach made all the difference for Dr. Sharma’s patient with advanced CF. Within six months, her weight was back to normal and her lung function improved by 20 percent.
“And, she went back to school, which is was what she wanted the most,” Dr. Sharma says. “To look at her now, you wouldn’t know she has CF.”
As a CF Foundation-accredited care center, we participate in the CF Foundation Patient Registry and regularly review this data to identify opportunities for improvement. For example, a few years ago, we found that only 25 percent of patients were getting their annual oral glucose tolerance test.
“To increase this number, we partnered with GI, nutrition and endocrine to educate families about the test,” Dr. Sharma says. “Then we streamlined the process so families wouldn’t lose an extra day to have the test done.”
The test is now part of patients’ regularly scheduled appointments. Patients drink the solution when they first arrive and then meet with providers during the test’s 2-hour waiting period. Their labs are drawn before they head home.
“The test now feels less onerous to families because they’re here for appointments anyway,” Dr. Sharma says.
These simple changes were incredibly effective – 97 percent of our patients now get an annual oral glucose tolerance test.
Our team also works together to tailor treatment plans.
“One plan doesn't fit every patient,” Dr. Sharma says. “We look for ways to help patients get in all the necessary therapies, while being successful at everything else they want to do.”
That could mean developing a tailored treatment plan to help a teenager make it to morning band practice. She gives her patients “a menu of options” – like choosing between a nebulizer or inhaler medication – and helps them choose based on their schedules.
“If they want to be in the band, I want them to be in the band,” Dr. Sharma says. “We're going to figure out a way.”
Thanks to our focus on tailored treatments and adherence, we’ve seen a significant improvement in our teenage patients’ lung function.
Our collaborative approach, process improvement work, and positive outcomes helped us land a Quality Care Award from the Cystic Fibrosis Center in 2018.
“Our focus is not only on bringing cutting-edge therapies and new research to patients, but also giving them the best ways to care for themselves in the long-term,” Dr. Sharma says.
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