Quality and Outcomes Reports - Pulmonary and Sleep Medicine

Cystic Fibrosis: Guidelines for Care in Children

Why we measure it - The Cystic Fibrosis Foundation has gathered experts in clinical care who have reviewed the medical literature and research to create clinical practice guidelines for all individuals with cystic fibrosis. Research demonstrates that consistent monitoring of health will indicate when subtle changes occur and additional intervention is required.

What this means - The Cystic Fibrosis center at Children's Hospital of Wisconsin is an accredited care center by the CF Foundation. Accreditation requires that our CF clinicians provide care based on the following guidelines: a recommendation for a minimum of four visits to a certified CF center annually, two pulmonary function tests each year, sputum cultures frequency and laboratory testing.

About the data - In 2005 our CF center was invited to participate in the CF Foundation Quality Improvement Initiative. Since the beginning of our participation in this initiative, our CF center standardized our CF treatment protocols which ensured consistency in the ordering and scheduling processes for appointments and testing. This is reflected in our ability to maintain a higher percentage than the national average and to consistently meet the guidelines for care compared with the top 10 CF care centers.

Related dimensions of care:

What we're doing to provide the best care:

• The Cystic Fibrosis Center at 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 Quality Improvement Processes and Accomplishments.
• Annual laboratory testing is performed as part of the CF clinic visit. This includes the four-hour glucose tolerance test for individuals older than 10 years of age.
• Arrangements are easily made for annual laboratory testing to be performed locally for families who are required to do so by their insurance providers.
• The quality improvement initiative began in 2005 and is reevaluated on an annual basis.
• Quarterly family education programs are offered at the Children's Hospital in Milwaukee or at the adult center at Froedtert Hospital. Topics for these programs are selected by a collaborative team of families and CF center staff 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 relevant information from you before you see the doctor.

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
  • Pediatric Rounds
  • Webcasts
• Pocket Directory

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