by Tim Bonfield
Thomas Boat, MD, leads development of the new Cystic Fibrosis Learning and Education Center at Cincinnati Children’s.
Better sleep. Reduced stress. Improved fitness. Support for school performance.
These prescriptions for improving day-to-day life may have as deep an impact upon health outcomes for children and adults with cystic fibrosis (CF) as the introduction of new medications. So says the leader of the new Cystic Fibrosis Learning and Education Center at Cincinnati Children’s.
Thomas Boat, MD, recently returned to the medical center after serving as Dean of the University of Cincinnati College of Medicine. Boat’s long career includes extensive experience in CF care and in supporting CF research. Now he is coordinating an effort involving faculty and staff from Cincinnati Children’s and UC Health’s CF Center to create and adopt innovative concepts in cystic fibrosis care.
”This is a frontal assault on the social, behavioral and economic dimensions of cystic fibrosis,” Boat says. “It is certainly very exciting to see new medications and new technologies coming along for individuals with CF. But if families struggle to manage the basic aspects of their lives, these new developments won’t make as much difference as they could. The ability of parents and patients to manage their own care is 95 percent of the game, and we don’t know how best to meet this challenge.”
One of the new learning center’s missions is to prepare health professionals for a new era in CF care, an era in which many more children with CF will survive long into adulthood. Initial funding comes from the Boomer Esiason Foundation, the charity launched by the former NFL quarterback whose 24-year-old son Gunnar has cystic fibrosis. Since 1993, the foundation has raised more than $100 million for CF research, scholarships and other support.
Through the new learning center, Boat says the CF program at Cincinnati Children’s will serve as an incubator for launching and evaluating more comprehensive promotion of health and wellness. The most successful ideas will be shared across a national network of CF care centers accredited by the Cystic Fibrosis Foundation.
“One of our first focus areas will be sleep,” Boat says. “It is well known that kids with CF, much like others with complex chronic disease, do not sleep as well or as much as healthier kids. Interestingly, their parents don’t either."
During an empathy exercise, a physician breathes through a straw with his nose pinched to gain more understanding of life with cystic fibrosis.
Studies conducted at Cincinnati Children’s and other research centers have confirmed that lack of sleep is linked to faster disease progression and declining pulmonary function for children with CF. The harder step is finding effective ways to help children get the sleep they need, Boat says.
“A lot of the adherence issues in CF have to do with the fact that routine care takes two or more hours every day,” Boat says. “That’s in addition to the frequent medical visits, plus taking care of the siblings, getting them to school, getting to work, and doing all the other things families have to do. It is no surprise that so many parents and patients think or even say, ‘I’m whipped. I’m burned out.’”
Unrelenting stress takes a big toll. Another major effort of the center will study the ability of stress reduction techniques to improve the quality of life for CF families. CF health professionals will likely also benefit.
The first sleep and stress management initiatives will roll out this fall, Boat says. Longer term, the center also is studying how it can be more effective at supporting the educational needs of children with CF.
“We know that school success is a huge resilience factor,” Boat says. “The kids who do better in school also tend to do better emotionally, and they are likely to do better managing their therapy. School success also promotes economic and social stability in adulthood, an important outcome for CF patients, many of whom we predict will become older adults.”
Unlike 30 years ago, many more children with CF are growing up healthy enough to lead productive adult lives. Many will want to go to college. Many will need to work. All this makes it increasingly important that small children with CF are prepared for success when they reach school age, Boat says.
The new CF learning center plans to tap into wide-ranging expertise at Cincinnati Children’s in complex chronic care, adherence research, sleep disorders, behavioral health and more. The project includes specialists from the UC College of Medicine in sleep medicine, integrative medicine and other fields. Boat also envisions involving a variety of community organizations along the way.
A platform for planning and program development within the CF Learning and Education Center will use information technology to create communication “exchanges” that connect and encourage the contribution of ideas from CF families, health professionals, and others, both here in Cincinnati and ultimately from a national or even global network of the CF Center.
“Our first steps, however, need to raise awareness among CF health professionals,” Boat says. “Because if they don’t buy in, they won’t be as effective at helping families.”