Quality and Outcomes Reports - Pulmonary and Sleep Medicine

Cystic Fibrosis Clinic Visit Volume

Why we measure it - The Cystic Fibrosis Foundation Patient Registry Report shows that physicians and hospitals that treat a large number of patients tend to provide better care and have improved outcomes for cystic fibrosis.

What this means - The Cystic Fibrosis program provides care for children and young adults with cystic fibrosis. In 2009, there were 14 new diagnoses made - the largest increase in the state, according to the Wisconsin State Laboratory. Most new diagnoses are newborns identified through the state of Wisconsin's newborn screening program.

About the data - These data reflect the number of patient visits in our billing system under each clinic category from 2008-2011.

Related dimensions of care:

What we're doing to provide the best care:

  • The Cystic Fibrosis Clinic at Children's Hospital is accredited by the Cystic Fibrosis Foundation. This accreditation indicates that our center has met the rigorous evaluation of nationally respected clinical experts who evaluate CF programs every five years. Our most recent accreditation visit was in 2010.
  • The Cystic Fibrosis Center at the Children's Hospital of Wisconsin and Froedtert & Medical College of Wisconsin was one of the 2010 recipients of the Cystic Fibrosis Foundation's Quality Care Award: Recognizing Outstanding QI Processes and Accomplishments.
  • Based on the most recent data from the CF Foundation Patient Registry, school-age children managed at our center have lung function and nutritional outcomes above the national average. More specifically, these outcomes place our center among the top 10 centers in pulmonary clinical outcomes for school age children and nutritional outcomes.
  • The Cystic Fibrosis Center at Children's Hospital offers a multidisciplinary team of CF specialists including pulmonologists, dietitians, respiratory therapists, genetic counselor, social worker, nurses and nurse practitioner who consult with the patient and family at each clinic visit.
  • Newborns diagnosed with cystic fibrosis are seen by the cystic fibrosis team within one business day of diagnosis.
  • Because CF affects multiple organ systems, we coordinate care with other campus specialists who have the skill and expertise in this disease. We collaborate with gastroenterologist specialists with an interest in CF as well as ear, nose and throat (ENT) specialists, the feeding team and behavioral health.
  • We work with Froedtert Hospital to transition our adult patients to their Cystic Fibrosis Clinic, which opened in 2005.
  • The sweat test is the "gold standard" for definitively diagnosing cystic fibrosis. The laboratory at Children's Hospital of Wisconsin is one of five locations in the state that is accredited as a testing site by the CF Foundation.
  • The Cystic Fibrosis Center was designated as a research site as part of the CF Foundation Therapeutic Development network in 2008 allowing our center to participate in multicenter clinical trials and CF research.
  • Quarterly family education programs are offered at the Children's Hospital main campus or at the adult center at Froedtert Hospital. Topics for the programs are selected by a collaborative team of families and CF team members. The events are open to the public.

Patients and families:

  • If you cannot keep a scheduled appointment, please call Central Scheduling at (877) 607-5280 or (414) 607-5280 as soon as possible to reschedule so another child can be seen.
  • Arrive 15 minutes before your scheduled appointment so we can gather needed information from you before you see the doctor.
  • Each clinic appointment will include a breathing test (PFT) and consultations with other team members, which can make appointments lengthy. Please expect to spend several hours for a clinic appointment. 

Referring physicians:

  • Referring physicians can access our specialists for consultation or transport 24 hours a day. Call our physician referral line at (800) 266-0366.  
  • Health care providers from outside of our southeastern Wisconsin service area are encouraged to use our web-based
    e-Consult service. This service is available for non-urgent patient cases only and gives providers access to our specialists to review patient cases, obtain medical advice or second opinions, and receive care recommendations for rare symptoms and illnesses.
    e-Consult is not to be used by the general public, parents/guardians or families.
  • Care guidelines for medical professionals
  • Educational materials
  • Pocket Directory

If you have questions about this data or information, email us or call (414) 266-6556.