Contact Affiliate CF Centers
St. Vincent Hosptial, Green Bay
(920) 496-4700
Marshfield Clinic, Marshfield
(800) 782-8581 ext. 75251
Gundersen Lutheran Clinic, La Crosse
(608) 775-5848
Affiliate CF Programs
The purpose of the cystic fibrosis affiliate program is to extend the comprehensive care programs and research protocols of the Cystic Fibrosis Foundation to a larger number of patients and families affected by cystic fibrosis. We are proud to announce that in 1997, the Cystic Fibrosis Foundation has approved the Marshfield and Green Bay sites as affiliate CF Programs. Both of these locations have committed multidisciplinary care teams to address the complex needs of patients with CF. In 2005, the Cystic Fibrosis Foundation approved the Gundersen Lutheran Clinic as an affiliate center. We encourage patients to be seen quarterly.
Patients who are seen at the affiliate program sites will receive the CF Center Newsletter and will be eligible for participation in clinical trials.
Why Do We Recommend 4 Visits Per Year to the CF Center?
At a minimum, the Cystic Fibrosis Foundation recommends four visits per year to an accredited CF Center. Where did this recommendation come from? There are several reasons for this. First, both the adult and pediatric physicians in CF Centers have specialty training in pulmonology. This means that in addition to three years of training in general pediatrics or internal medicine, these physicians also have an additional three years of training in lung disease. Although we all believe that CF patients should have a local pediatrician, family physician or internist, there are substantial benefits in seeing a pulmonary specialist. There is quite a bit of "finesse" in caring for CF patients. We are aware of advances in CF care such as Pulmozyme®, new forms of airway clearance, use of inhaled antibiotics, et cetera. Unless a physician specializes in the treatment of lung disease, these are topics that a general doctor cannot keep up with. Secondly, CF Centers have multidisciplinary teams to provide the best care for patients. Clinical nurse specialists, dieticians, respiratory therapists, pharmacists and social workers all work together to enhance the care that is given to patients. Thirdly, how was the specific number of four visits per year determined?
To answer this latter question, we turn to a report by Dr. Robert Wood from the University of North Carolina-Chapel Hill, presented at the 1985 Cystic Fibrosis Conference. Three Cystic Fibrosis Centers were compared to each other. Center "A" had a median survival of 9.2 years; center "B" had a median survival of 18.0 years; and center "C" had a median survival of 23.5 years. (Fortunately, the survival of CF patients has lengthened considerably since this report of 11 years ago.) The characteristics of the three centers were similar in terms of numbers of patients, size of metropolitan area and continuity of center medical personnel. The characteristics of the three patient populations at first visit to the centers were not different in ways that would be expected to predict subsequent survival. Age at diagnosis and age at first referral to the center were similar among the centers. The results of respiratory cultures were not significantly different among the three centers. Hospitalization patterns were also similar among the three centers in terms of indication for admission, the percentage of patients hospitalized during each calendar year, the number of days in hospital for each patient, and patterns of treatment given (physiotherapy, antibiotics, et cetera). With all of these similarities, why was there a difference in survival between the three centers? The differences were in outpatient treatment practices which was best characterized in terms of frequency of visits and intensity of care. In other words, the patients that were seen in the CF Center more often were healthier than those who were seen less frequently.
As with any general recommendation, there will be rare exceptions to the rule. Patients who live very far distances from the CF Center who are presently in a period of stability may require fewer than 4 visits per year to the center. Other patients may require more than 4 visits per year to the CF Center. If you have specific questions about the frequency of your care, please speak to the center personnel at your next visit.