A 'Best' Hospital for Cystic Fibrosis Kids

Unhappy with its so-so record, Cincinnati Children's used tools of health reform to turn itself around.


When the numbers were released in 2006, the differences from center to center were immediately apparent. Cincinnati Children's, however, had known five years earlier that it had to improve. In 2001, the hospital persuaded the foundation to hand over performance data from a few top-performing centers, expecting that its own numbers would compare favorably. Instead, the figures described a troubling portrait of care that was mediocre or worse. Cincinnati Children's launched an unflinchingly critical self-examination. Top administrators and clinicians invited the parents of the hospital's CF children to a meeting. They displayed the stark data in PowerPoint slides, pledged to do much better, and asked the families to help. "We laid our dirty laundry on the table," says James Acton, director of the cystic fibrosis center at Cincinnati Children's.

Less than 10 years later—a blink in the life of a large institution—the hospital is now among the small handful of elite CF centers. "They became some of the deepest students of the study of perfection," says Don Berwick, who as CEO of the Institute for Healthcare Improvement in Cambridge, Mass., which promotes practices that enhance safety and quality, frequently advised Cincinnati Children's as the hospital reinvented itself. (This month Berwick took over as newly appointed head of the federal Centers for Medicare and Medicaid Services.)

Cincinnati Children's is not alone in recognizing inadequate performance and vowing to do better; it was one of many hospitals that sought a "persuing perfection" grant from the Robert Wood Johnson Foundation to support its turnaround effort, for example. But it is telling that years before health reform became law in March, the hospital built its road to improvement using many of the same tools Congress wrote into the final package:

Evidence-based medicine. Detractors of EBM worry that it means studies and data and not a physician's accumulated clinical wisdom should dictate care. It doesn't, or shouldn't. The idea, rather, is that well-done research should help guide treatment. For example, Pseudomonas aeruginosa is a nasty bacterium that has a particular affinity for the mucus in the lungs of CF patients and is responsible for a disproportionate share of their hospitalizations and deaths. Many children with cystic fibrosis show no symptoms of infection but repeatedly test positive for the bug. Given its lethal nature, it makes sense to damp it down to the lowest possible level, and many studies have shown that routinely inhaling the antibiotic Tobramycin keeps the bug at bay.

When Cincinnati Children's began to dissect its own performance and plot out how it could improve, the CF care team and quality analysts saw that the evidence for using Tobi (no one uses the drug's full name) with chronically infected kids was powerful and that the hospital wasn't even in the top quarter of centers in keeping patients on it. It's not an easy drug to use, eating up an hour or more a day with no obvious benefit because of the absence of symptoms. The hospital's doctors intensified their work to educate families on the benefits of Tobi even for children who did not appear ill. Parents were enlisted as partners, reaching out to other parents. (One of them, Tracey Blackwelder, was the mother of four CF children, all under the hospital's care. She is now on staff to help the hospital find similarly motivated parents to join "improvement teams.")

Progress in Tobi use was charted. Now prescriptions are written for about 80 percent of eligible children, says Acton. That compares with fewer than half of patients at about 1 in 7 centers nationally.

Nor had the hospital previously been especially diligent in making sure children with low BMIs received extra calories by mouth or through a tube or port. In 2004, 61 percent of its low-BMI children, almost exactly the national average, got supplemental feeding. The national average now stands at 71 percent. The Cincinnati Children's rate is 91 percent.