Transitioning to Adult Care with Cystic Fibrosis
As cystic fibrosis care improves with medical advances and increased knowledge of the disease, the population of adults with CF continues to grow. All CFF-accredited CF care centers are required to have an adult CF program to best meet the needs of the growing adult CF patient population.
Lurie Children's adult cystic fibrosis program at Northwestern University was accredited in 1999. The role of the CF team is to partner with the family to facilitate the teenager's transition to self-care when appropriate. When ready, these individuals have the option of meeting the doctor and nurse from the Northwestern University Adult CF Program at one or more hospital visits until their CF care is finally transferred to the adult program.
In many ways, adult care is distinctly different from pediatric childhood CF care. Issues of pregnancy, reproduction, employment and insurance are best addressed by a care team dedicated to adult needs.
One of the earliest steps in learning self-care is being able to report medications and treatment regimens. Later on, the teen may be interviewed independently, and the parent brought in afterwards to summarize the visit.
Lurie Children's Adult Team
Lurie Children’s adult CF program is staffed by a dedicated multidisciplinary team, including pulmonologists, a nurse coordinator, a nutritionist, a respiratory therapist, a social worker and physical therapists.
The adult CF team provides comprehensive care, including close monitoring of pulmonary function, early and aggressive treatment of upper respiratory illnesses, nutritional surveillance and assistance with optimizing nutritional status, support for emotional and financial considerations, and education and review of airway clearance techniques and exercise regimens.
Appointments with the adult CF team are available every Wednesday morning at Lurie Children's. Spirometry (lung function testing), radiology and laboratory services are available on site. Valet parking is available in the hospital parking garage. To schedule an appointment, call 312.227.6730. When an individual is ill, visits are available in the Pulmonary Clinic at Northwestern Medicine.
Adults with cystic fibrosis who need hospitalization are admitted to Northwestern Memorial Hospital in downtown Chicago. The current state-of-the-art facility was rebuilt and opened in 1999. The hospital's inpatient rooms are all private rooms, and visitors are allowed 24 hours a day; day beds are available for visitors who wish to spend the night.
The hospital facility includes a food court for additional dining options, coffee shops, gift shops, and book store. Parking is available adjacent to the main hospital. Individuals with CF are admitted to 14 East, a general medicine pulmonary unit, where the medical, nursing and respiratory therapy staffs are familiar with cystic fibrosis care.
Advancing research to improve treatments and quality of life in cystic fibrosis is a mission of the adult CF program at Northwestern University. The program participates in many clinical trials and observational studies, often in conjunction with the pediatric CF program at Lurie Children's.