UH Rainbow Cystic Fibrosis Team Pushes the Boundaries of Care

Remote patient monitoring and outpatient physical therapy supported by Cystic Fibrosis Foundation grants

The cystic fibrosis (CF) team at UH Rainbow Babies & Children’s Hospital is innovating new approaches to care, exploring remote monitoring to increase patient convenience and outpatient physical therapy to support and promote exercise among CF patients. Both projects recently won competitive grant support from the Cystic Fibrosis Foundation. In fact, the UH Rainbow CF program is one of just four in the nation where remote patient monitoring is being studied.

Clinical practices borne out of necessity during the COVID-19 pandemic laid the groundwork for successful remote monitoring of CF patients, says project leader and CF specialist Alex H. Gifford, MD, FCCP, Co-Director of the Cystic Fibrosis Therapeutics Development Center, Leroy W. Matthews Cystic Fibrosis Center at UH Rainbow. Dr. Gifford also holds the Connie and Jim Brown Chair in Pediatric Pulmonary Survivorship.

“During the pandemic, all CF care teams became experienced with conducting clinic visits through audio/video telemedicine platforms,” he says. “Many people with CF found this virtual clinic option to be both effective and preferable. Many people with CF also received and began using spirometers at home so that they could monitor their lung function without coming to clinic. The combination of remote monitoring technology and growing familiarity with providing services remotely has facilitated the development of care pathways that effectively satisfy our patients’ needs in a much more convenient and efficient way.”

How it works: Instead of traveling to UH Rainbow every three months or even more frequently, patients in the remote monitoring project use a simple system to collect and ship sputum samples from home. They monitor their lung function with a home spirometer and have blood work done locally, at their convenience. A smartphone app provides customized care reminders and educational text and videos to help patients successfully manage their own care, while also allowing them to track trends in their own clinical data.

The goal is improved outcomes – and greater convenience for patients, Dr. Gifford says

“The healthcare burden that people with CF manage is enormous,” he says. “However, with improving outcomes, there is hope that this can be significantly reduced. Ultimately, we hope to achieve improved complication screening rates and disease monitoring while requiring half as many trips to the hospital CF clinic.

“We haven't done anything like this before to see if it’s feasible,” adds Ankica Katic, CNP, Associate Nurse Practitioner in the UH Rainbow CF Clinic. “It’s not for everybody, but some patients are already used to it. Some of our patients live a couple of hours away, even an hour and a half. When you think about clinic visits four times a year, plus maybe when you get sick, too, that's a lot of traveling.”

Further innovation: In addition to its work with remote monitoring, the UH Rainbow CF team is now providing outpatient physical therapy services to its adult patients – a service most programs don’t provide.

“Most CF care programs, adult or pediatric, don't have a physical therapist in the outpatient setting,” Dr. Gifford says. “We are fortunate to have Chelsea Rogen, PT, DPT, a specialized member of the acute care PT team, who routinely works with our adults with CF during hospital admissions. Chelsea is quite familiar with these patients when they return for outpatient follow-up, which ensures continuity of care.”

Rogen says one of her key goals is to boost the number of CF patients using exercise as a primary or secondary airway clearance technique. Plus, she says she hopes to help patients understand just what modern therapeutics for CF now allow them to do.

“For my part, I'm really hoping to get people more excited and prepared to begin an exercise program if they haven't already, and then use it as a tool to help them manage their disease progression,” she says. “Highly effective CFTR modulator therapy has created a whole new baseline. Before, a lot of people felt they couldn’t exercise because they were so limited by shortness of breath. Now, they're excited about exercising, but a lot of them don't really know where to start. I’m happy to help them with that and suggest activity modifications and progressions when needed.”