When the staff at Cincinnati Children's realized in 2001 that average lung function for its CF kids from 6 to 17 was less than 80 percent of normal, trailing the national average of about 84 percent and the top center's 93 percent, they increased the frequency of lung infection checks to every three months instead of once a year. Parents were taught new and better ways to clear their child's airway. Reminders to get flu shots went out. Today, national average lung function has improved to about 93 percent. At Cincinnati Children's it has rocketed to a better-than-normal 102.5 percent.
Learning from other centers. CF center director James Acton examines 8-year-old outpatient Raegan Holley and asks her mother, Dawn, 15 questions displayed on the nearby monitor. Raegan will receive a "pulmonary exacerbation score," or PES, of 0 to 38 according to the number and severity of her current respiratory symptoms (such as increased cough for a week or more) and objective measurements (such as blood oxygen level). A perfect PES is 0. Five or higher suggests that she needs a change in her lung-clearing technique or a more effective antibiotic.
The PES score sheet is Acton's favorite example of how the hospital worked with another center to benefit patients. The sheet, developed at Akron Children's Hospital, caught Acton's eye when the director of its CF center presented it at the annual meeting of the North American Cystic Fibrosis Conference conference. When Acton returned, he shared it with the hospital's CF team. The Akron center then helped its Cincinnati counterpart document the extent to which evaluations of outpatients varied from physician to physician, resulting in more- or less-aggressive care depending on each doctor's clinical preferences. "They didn't believe it at first when I showed them the results," says Acton. By standardizing assessments, he argued, care would be improved. And that, he says, is what happened.
Defining ambitious goals. Although Cincinnati Children's now outpaces most other CF centers in the nation, its clinicians and quality specialists are not satisfied. "There's incremental improvement every year," says Bruce Marshall, the Cystic Fibrosis Foundation's vice president for clinical affairs. The hospital's 2011 goals include pushing lung function up a point—to 106.3 percent for kids from ages 6 to 12 and to a lesser but still ambitious 100 percent for those 13 to 17. (As children reach adolescence, many become less faithful to the critical daily routines.)
Nutritional status, CF's other key indicator, now stands at 60 percent for the hospital's CF patients, meaning that 60 percent of the children are at or above the 50th percentile, or average, for BMI. The current national average is slightly above 48 percent; Cincinnati Children's is aiming for 62 percent in 2011.
Improved performance for children with an elevated PES aims even higher. At the moment, a tally of 5 or higher on a clinic visit produces a documented change in the child's care plan about 40 percent of the time. The 2011 target is to double that to 80 percent.
Collaborating with families. The healthcare reform law calls for providers of medical care to involve patients, parents, and other caregivers in "shared decision making," with each a full partner in charting a course of action. That families should actively take part, with their views on appropriate care considered as important as those of the doctors, remains a foreign notion at most hospitals. Not at this one.
Annelise Page was labeled an urgent nutritional risk when she was 7 years old; her BMI was in the lowest 10th percentile. The family and the center's physicians and dietitians had "many difficult discussions" about the best way to help her, says Acton. They "were very clear about balancing quality of life with the need for sometimes intrusive interventions" such as a feeding-tube port into her stomach, which Annelise rejected. ("That won't look good with a bikini.")
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