Information for Transitioning Your Child to Adult Care
The Adult Cystic Fibrosis (CF) Care Program at UPMC is one of the largest adult cystic fibrosis programs in the United States. Patients from the Antonio J. and Janet Palumbo Cystic Fibrosis Center at UPMC Children's Hospital of Pittsburgh are transitioned to UPMC’s adult care program at about age 18-21.
The adult care team consists of pulmonologists, an advanced practice nurse, nurse coordinators, a palliative care nurse practitioner, a nutritionist, respiratory therapist, pharmacist, and a social worker. Specialists in endocrine, gastroenterology, ENT (ear, nose and throat), surgery, as well as other subspecialists familiar with cystic fibrosis patients are readily available on-site. In addition, the Adult CF Care Program has a close working relationship with UPMC’s Lung Transplant Program.
UPMC’s Adult CF Care Program is located in the Falk Medical Building’s Comprehensive Lung Center. Patients requiring hospital care are admitted to UPMC Presbyterian. Meet the Adult Cystic Fibrosis Center doctors and staff.
Appointments for Adult Care
Nearly one half of the 450 patients at the Antonio J. and Janet Palumbo Cystic Fibrosis Center are seen in UPMC’s adult program. It's important as children grow older to have regular clinic follow-up appointments. A consensus of CF patient care leaders has determined that by getting frequent, close follow-up care, adult patients have better outcomes and stay well longer. The Clinical Practice Guidelines for Cystic Fibrosis from the CF Foundation recommend quarterly (every three months), routine follow-up visits for all CF patients. Frequent visits allow for the assessment of lung function and nutritional status, and facilitate earlier intervention. You should make your follow-up appointment before leaving the clinic. If you do not, below is important information for patients.
Hours:
8:30 a.m.–4:30 p.m., Monday–Friday
Scheduling: 412-648-6161, Option 2
Social Worker: 412-246-5990
Nutritionist: 412-692-5677
Nurse Call Line:
412-692-8764 or 412-692-5630
After Hours, Sick or Urgent: 412-648-6161
You must identify yourself as a CF patient when you call. An adult CF physician is on call for your sick or urgent needs after hours. Emergency care can be provided at UPMC Presbyterian’s Emergency Department.
The Pulmonary Function Test (PFT) appointment is scheduled separately and is usually 15 to 30 minutes prior to your clinic appointment. Because UPMC’s clinics are always full, there often is a waiting list. To cancel an appointment, please call at least 24 to 48 hours in advance to allow for a replacement.
Cystic Fibrosis Adult Outcomes
The Cystic Fibrosis Foundation (CFF) now publishes national outcome data from cystic fibrosis (CF) centers across the United States.
Below are pulmonary function and nutritional outcomes from UPMC. Both outcomes are considered important indicators of the health of CF patients. These two aspects have significant prognostic implications and are strong determinants of longevity (length of life) and quality of life. The Forced Expiratory Volume in 1 second (FEV1, the volume of air a person is able to forcefully blow out in a second) is considered a good indicator of lung function. The Body Mass Index (BMI, a ratio of body weight to stature) is considered a good indicator of nutritional status.
UPMC's data is shown compared to the average outcomes reported by the CFF for all accredited CF centers in the United States and also against the values reported by those centers regarded as top 10 performers. (2018 data)
- Lung Function in Adults* – Median FEV1percent of predicted in adults 18 years of age and older.
Level at UPMC's Adult CF Center – 66.0
National Average – 67.2
- Nutritional Status in Adults* – Median BMI in adults 20 years of age and older.
Level at UPMC's Adult CF Center – 22.6
National Average – 22.9
- Guidelines for Care in Adults – Percent of adults 18 years of age and older who had at least four clinic visits, two lung function tests, and a sputum of throat culture.
Level at UPMC's Adult CF Center – 63.2
National Average – 54.3
* Adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status and age of diagnosis
The above data is raw data supplied to us by the Cystic Fibrosis Foundation (CFF). There are factors that can influence the data. The CFF has made adjustments in the data (adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis) and has publicly reported this on its Web site.
