Patients with cystic fibrosis under 21 years of age receive their routine care at St. Louis Children's Hospital. Clinics are usually scheduled in the Pediatric Ambulatory Center on Thrusday afternoons, but children colonized with Burkholderia cepacia complex are only seen on Friday afternoons. Patients can be seen at other times as clinically indicated. Individual physicians, who have primary responsibility for their patients, attend the clinic with two cystic fibrosis nurses, the center dietician, clinical social workers, and respiratory therapist.
When necessary, children with cystic fibrosis are admitted to St. Louis Children's Hospital pediatric wards, under the care of pediatric residents and pulmonary fellows, with attending supervision from the Division of Pediatric Allergy and Pulmonary Medicine. A newly remodeled Respiratory Unit (7E) was recently opened, which houses many of our admitted cystic fibrosis patients. Patients colonized with Burkholderia species will still continue to be admitted to a separate ward (8W) to avoid contamination and cross-infection.
The Cystic Fibrosis Center team meets every Tuesday morning to review all inpatients and outpatients scheduled to be seen over the next week, as well as discuss patient-related issues, research projects, and other center related items. The adult and pediatric center directors meet frequently to review the programs and ongoing clinical research projects, and the entire adult and pediatric teams convene formally three times each year.
Cystic fibrosis patients admitted to St. Louis Children's Hospital are often reviewed with the other members of the Division (including physicians, nurses, respiratory therpists, dieticians, and physical therapists) during a weekly patient care conference.
As chidlren approach 18 years of age, discussion and couseling with the patients and families begin regarding transition of care to the Adult Cystic Fibrosis Center. With rare exception, all patients are transferred by age 21.