July 28, 2000

Group to share data in cystic fibrosis fight

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Dr.Dennis Stokes, here examining 15-year-old Paul Wallace in the pediatric cystic fibrosis clinic, says VUMC’s involvement in a regional CF information-sharing collaborative will benefit research and patient care. (photo by Dana Johnson)

Group to share data in cystic fibrosis fight

The Vanderbilt Cystic Fibrosis Center is teaming up with cystic fibrosis teams from eight southern states in hopes that sharing information will lead to improved care for CF patients.

The Southeastern Cystic Fibrosis Care Improvement Collaborative is a group of southeastern CF teams from Kentucky, Tennessee, Mississippi, Louisiana, Arkansas, northern Florida, Alabama and Georgia. The group, which meets twice a year, met recently in Atlanta with several VUMC faculty and staff attending.

The group's goal is to promote use of performance improvement science in CF care centers and to collaborate on regional CF clinical improvement and clinical research projects, said Dr. Dennis Stokes, associate professor of Pediatrics, director of the Vanderbilt Cystic Fibrosis Center, and organizer of the collaborative effort.

"We have a great CF team here at Vanderbilt — physicians, nurses, nutritionists and social workers with one goal in mind, providing better care for the more than 400 adult and pediatric CF patients at Vanderbilt and at two affiliated CF programs in Knoxville and Chattanooga. Meeting with groups from other states allows us to network and share ideas."

Stokes is also on the scientific advisory group for the Epidemiological Study of Cystic Fibrosis, a large, multi-center trial of participating CF centers. The participants in the trial are developing data about practice patterns of CF, medication use and pulmonary function in over 19,000 CF patients over the past five years. Regional data from this study is also being used by the Southeast group in their improvement efforts.

It was through this group and his participation in a similar Institute for Healthcare Improvement asthma collaborative that Stokes and others became interested in forming the southeastern group.

One of the group's members, Pamela Fishel-Ingram, Ph.D., assistant professor of Psychiatry, works with the collaborative's behavioral health workgroup to help standardize education for CF patients.

"There are a lot of educational materials but there must be materials that are appropriate for infants and children as well as teenagers and young adults and a formal mechanism for implementing education at the appropriate times," Stokes said.

There are several workgroups within the collaborative that focus on issues such as patient education, data analysis, nutrition and pulmonary issues, Stokes said. At the Atlanta conference, the nutrition subgroup presented information that helped participants from another center realize that its nutritional outcomes were not up to the national average.

"They instituted a very aggressive program of nutritional support and were able to increase their patients' use of gastrostomy tubes and supplemental nutritional feedings from 0 percent to six to seven percent. It was a substantial improvement in their nutritional outcomes based on information that came directly from regional and national benchmarking data," Stokes said.

Between meetings, members of the collaborative routinely meet on-line to discuss anything from antibiotic use to patient isolation policies and to share community calendars.

"It's a cost effective way of getting 15 centers and 90 people to work together on an ongoing basis. We think it's the way of the future as far as how groups like this can work together," Stokes said.

One group is focusing on the care of adult patients. About one-third of Vanderbilt's patients are adults. The Vanderbilt Adult Cystic Fibrosis Center is one of only 66 accredited adult CF centers in the country.

Dr. Bonnie Slovis, assistant professor of Medicine, heads the adult program at VUMC. Vanderbilt is a mentoring site for other centers who want to visit and observe, she said. In addition to offering the best of care for adult CF patients, VUMC is also training physicians in the care of adult patients.

"We require training in CF for the adult pulmonary fellows to increase the pool of adult pulmonologists available to care for the rising numbers of adults with the disease," she said. "We need more adult centers because the life expectancy is rising. By 2001 it is estimated that 50 percent of patients with CF will be older than 18," Slovis said.

"They need reproductive counseling, gynecological care, mammograms, colon cancer screening, etc., and they need to assume responsibility for their care and be managed as adults."

Stokes said that recent grants are helping the center fulfill its mission. The Vanderbilt Cystic Fibrosis Center recently received a grant from the Cystic Fibrosis Foundation of $137,619, the largest yearly award the center has received from the CFF.

In addition to Stokes, Slovis and Fishel-Ingram, other Vanderbilt faculty and staff participating in the recent Atlanta collaborative meeting were: speakers Doris Quinn, from the Center for Improvement; Linda Norman, from the Vanderbilt University School of Nursing; Dr. Chris Harris, associate director of the CF Center; Judy Marciel and Michelle Caudill, CF case managers and nurse practitioners; Suzanne Campbell, a respiratory therapist; Rachel Ebie, a nutritionist; and Amy Schively, a pharmacist.