Pursuing Perfection: Report from Cincinnati Children’s on Improving Family-Centered Care for Cystic Fibrosis Patients

The Problem: The Cystic Fibrosis Center at Cincinnati Children’s Hospital Medical Center (Cincinnati, Ohio, USA) wanted better results for its patients. But leaders didn’t want to just improve outcomes; they wanted to increase collaboration among providers, patients, and families, enabling all partners to be equally vital team members working together toward common goals.
The Background: Cincinnati Children’s has long enjoyed a reputation as one of the nation’s best pediatric hospitals, consistently ranking among the top ten in the yearly review by U.S. News & World Report. Located in Cincinnati, Ohio, Cincinnati Children’s has 16 patient care sites throughout the region, including a 423-bed acute care hospital. The hospital offers the only Level 1 pediatric trauma center in southwestern Ohio, northern Kentucky, and southeastern Indiana, as well as the only pediatric cardiac intensive care unit in the region. The flagship hospital is also widely known for excellence in heart, kidney, and liver transplantation, as well as blood and marrow transplants. 
Cincinnati Children’s also has two unique characteristics among the Pursuing Perfection sites: It is the only one anchored by a pediatric hospital and entirely structured as an academic medical center. (The medical and research staff comprise the Department of Pediatrics at the University of Cincinnati College of Medicine.) Both of these distinctions drive Cincinnati Children’s approach to improvement work: Family members must be viewed as central to caring for pediatric patients and any changes must take into account an academic medical center’s multiple missions
As part of its Pursuing Perfection work, clinical leaders in Cincinnati Children’s well-regarded Cystic Fibrosis (CF) Center began to take a closer look at patient outcomes as well as how patients and families viewed their care. As chronicled in the lengthy December 2004 "The Bell Curve" article in The New Yorker magazine, the Center’s director, Jim Acton, MD, and his colleagues took the extraordinary step of inviting families whose children receive care at the Center to a presentation about how well the program was performing.
The very idea of organizing a meeting of this sort represented a turning point for Cincinnati Children’s and the CF Center, which, like the vast majority of health care providers, did not routinely disclose patient outcomes data to the public. But under the leadership of its CEO James Anderson, Cincinnati Children’s was coming around to the view that transparency is an essential aspect of truly patient-centered care — a new ideal to strive for.
At the meeting, staff wanted to share more than just data with the families. They wanted to share promises about improving the program. And, equally important, they wanted to invite the families — urge them, really — to help.
The Situation: CF, which causes a buildup of thick mucus in the lungs and often in the pancreas, compromises breathing and the body’s ability to digest and process nutrients, impairing normal growth and development. At Cincinnati Children’s, families were shown data comparing the health of their children with that of other CF patients around the country. The data revealed that, compared to patients at the 116 other CF centers in the US, lung function (i.e., how effectively the lungs process oxygen)  for the approximately 210 children in Cincinnati Children’s CF Center was “in the middle of the pack,” according to its head, Dr. Acton. Staff also presented data on nutritional status, which is directly linked to lung function, and an important global measure of overall health of children with CF.  “Historically, more than 40 percent of our kids were under the 10th percentile of weight for their age,” says Acton. Over time, lung function and nutritional status are important predictors of life expectancy for CF patients, who live on average to age 33. 
Institute for Healthcare Improvement former President and CEO Donald Berwick, MD, maintains that transparency builds trust between providers and patients. In remarks he gave as he accepted the 2004 TRUST Award from the Health Research and Educational Trust (HRET), a Chicago-based research group affiliated with the American Hospital Association, Berwick said that health care organizations are afraid that if they openly reveal their weaknesses, the public will not trust the care. “I think exactly the opposite is true,” he continued. “Unless we openly reveal our problems, the public cannot trust the care.”
Average care of young people with CF was hardly the news anyone at Cincinnati Children’s wanted to share with families, but the honesty on display engendered a new relationship of trust and collaboration. “The fact that they were not hiding these numbers, and were asking us to join them in moving forward, that was a pretty big step,” recalls Tracey Blackwelder, a mother of four children who receive care at the CF Center. She says that, despite the less than stellar data that were revealed, “There was an excitement in the room. We all left feeling enthusiastic about the prospect of working together to improve things.”
So when Jim Acton asked parents to step up and serve on several new committees that would work to improve the CF program — not as tokens, but as serious contributors to the improvement process — parents responded positively and filled each open committee seat.
 A member of the CF Team reviews an X-ray with
a young patient and her parent.
The Solution: Working collaboratively, and Dr. Acton emphasizes that it’s truly due to collaboration that things have changed, the CF team has been focusing on fulfilling a set of promises made to patients and families:
  • We will protect you from harm related to your care.
  • We will respect and value your time.
  • No place will preserve your lung function better.
  • We will optimize your nutritional status.
  • You may be involved in your care as much as you desire.
  • We will support our staff so they can focus on your needs.
  • You will get the care you need regardless of race, age, gender, education, or ability to pay.
The promises have been reinforced by new, concrete steps. Clinicians at the CF Center are taking more frequent respiratory cultures from patients and tracking lung function and nutritional status more carefully. This enables them to start interventions such as more aggressive breathing treatments or altering diets to increase caloric intake and boost growth at the earliest possible sign of trouble.
To more effectively ward off damaging respiratory infections, the team initiated an aggressive flu vaccine program, successful in part because of one parent’s common-sense suggestion. Recalls Dr. Acton, “We were talking about how we would track and manage the flu vaccine program, what kind of software we would need, what kind of database we would create. And one parent asked why we couldn’t just get started right away by keeping a list on paper. She challenged us to move forward in a simple way, to just get started.” So, they did. Now, Acton says, the information has been rolled into a database, because the hospital took the flu vaccine model created by the CF parents and providers and spread it to the rest of the institution.
There are other strategies at work at Cincinnati Children’s aimed at dramatic improvement. Together, providers and parents are benchmarking care at the country’s best CF centers to understand the subtleties that make the difference between very good care and excellent care. They are refining the protocols for airway clearance techniques, and teaching those refinements to respiratory therapists and to parents responsible for performing this task at home. They have implemented a process to categorize patients’ nutritional status to facilitate improved monitoring, and have created additional nutrition education programs. And they are creating a secure web-based portal where patients, families, and the health care team can access patients’ complete clinical information to support care and self-management.
Remarkably, they have also added parents as volunteers to the inpatient team for newly diagnosed patients. Tracey Blackwelder is among the parents who serve in that role, seeing families as part of their intake process into the Center. “My main focus is to help them figure out how to accomplish all the new things they need to do,” she says. “I go over worksheets about how to manage care at home. The connection is important for both of us; whenever you connect with another parent it’s rewarding.”
Recognizing the importance of peer support, parents have also created a formal parent-to-parent network that pairs those seeking additional support with those wishing to give it. This has been particularly valuable for parents of newly diagnosed patients or those whose child faces his or her first hospitalization or procedure. The parents also plan two annual social events: a Mothers’ Day Luncheon featuring an inspirational speaker (attended by several hundred last year), and a late-summer parents-only get-together.
The Results: The percentage of CF patients under the 10th percentile for weight has dropped from more than 40 percent to less than 25 percent. More than 95 percent of patients received flu vaccines this winter, compared to an estimated 40 percent prior to the new program. Eighty-five percent of patients have had a quarterly respiratory culture, compared with less than 50 percent three years ago. Anecdotally, parents and patients feel supported, involved, and valued as members of the care team.
What the Team Members Said: “Transparency brings its own benefits and complications, but you can’t create a meaningful partnership without it. Beneath it all must be a willingness to accept the data and believe it, to admit that you are not doing as well as you would like, and to commit to doing better. That’s the motivation for partnering: accepting reality and the need to change it. We have only begun to scratch the surface of this partnership and all we can accomplish together.”  – Jim Acton, MD, Director, Cincinnati Children’s Hospital Medical Center Cystic Fibrosis Center
“I feel very grateful to be part of this program, to be able to offer my unique perspective as a parent, to have a physician look in my eyes and really listen to what it’s like from my side. It is a huge step for the program to let us participate in this way, and the biggest benefit is that families are working together as a team with their physicians. Fears and concerns are laid out on the table, and we work through them. We are working together to move things forward.”  – Tracey Blackwelder, CF Improvement Team Member and mother of four children with CF who receive care at the Cincinnati Children’s CF Center
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