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Adult Care

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 Children’s Hospital of Pittsburgh of UPMC are transitioned to UPMC’s adult care program at about age 18-21.

The adult care team consists of pulmonologists, an advanced practice nurse, a physical therapist, a nutritionist, and a social worker. Specialists in 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. They also have a monthly CFRD Clinic with an endocrinologist experienced in cystic fibrosis joining the team to provide care to those with cystic fibrosis–related diabetes.

UPMC’s Adult CF Care Program is located in the Falk Medical Building’s Comprehensive Lung Center. Patients requiring hospital care are admitted either to UPMC Shadyside or UPMC Presbyterian. The program is staffed by:

Joel Weinberg, MD
Joseph Pilewski, MD
Michael Myerburg, MD
Connie Richless, CNS
Carolyn Walker, RN
Sandra Dunbar, RN
Judy Fulton, RD
Kristen Roberts, RD
Renee Stuebgen, SW

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 have 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 parents and patients.

Hours:	8:30 a.m.–3:30 p.m., Monday–Friday
Scheduling:	412-648-6161, Option 2
Social Worker:	412-692-5590
Nutritionist:	412-692-5677
Nurse Call Line:	412-692-8764 or 412-692-5630
After Hours, Sick or Urgent	412-621-1200

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 Shadyside’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. (2010 data)

Measures	Level at UPMC's Adult CF Center	National Average	National Goal
Lung Function in Adults * Mean FEV₁ percent of predicted in adults 18 years of age and older.	69.6	64.8	75.0
Nutritional Status in Adults * Mean BMI in adults 20 years of age and older.	22.5	22.7	23.0
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 or throat culture in 2009.	62.5	52.6	90.0

* 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.

Last Update
February 17, 2012

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