What to Expect at the Cystic Fibrosis Center

Cystic Fibrosis Clinic Visits 

Welcome to the Rhode Island Hospital/Hasbro Children’s Cystic Fibrosis Center. Our goal is to provide education, quality care, and access to research. To meet these goals, the Cystic Fibrosis (CF) Foundation recommends quarterly clinic visits, with infants being seen more often during the first year of life.  

Please arrive on time. We would greatly appreciate that you arrive 15 minutes before your appointment. If you need to cancel or reschedule an appointment, please make every effort to call at least 24 hours in advance; this allows us the opportunity to offer your appointment time to another patient.

For more information about appointments please call 401-444-3860.

A Photo Tour of the Cystic Fibrosis Clinic

What to Expect at Every Visit to the CF Clinic

• Register at the check-in desk and update your records with your correct address, phone number, insurance information, and primary care physician. Once registered, you will be directed to an exam room.
• Have your height, weight, and vital signs measured and recorded by our medical assistant.
• For patients five years of age or older, have a breathing test performed by a respiratory therapist.
• Review and report all medications, dosages and frequency of use. This is also your opportunity to review what prescription refills are needed and discuss medication concerns including  problems with insurance coverage or affording copays/deductibles.
• Visit with the doctor and other team members that you or the team thinks appropriate. We invite you to raise any questions or concerns during these visits.

Cystic Fibrosis Treatment Options

Living with cystic fibrosis (CF) can be challenging. The Cystic Fibrosis Center at Hasbro Children’s offers a variety of effective treatment options to help those affected by CF manage their symptoms and live full, comfortable lives. Though effective management of the disease requires a combination of medications and therapy regimens, the center aims to provide a safe, secure space for our patients dealing with CF.  

What to Expect Every Three Months

In addition to what is expected at every visit, every three months:

• A sputum sample will be collected for culture. CF Foundation guidelines recommend four cultures per year. Cultures may be done more frequently if needed.

What to Expect Every Year

In addition to what is expected at every visit, once a year, patients will have:

• Blood tests that include vitamin levels, blood count, blood chemistry, liver and kidney function tests. If age 10 or older, a 2-hour glucose tolerance test to measure blood sugar.
• A complete nutritional evaluation that includes a review of dietary needs and intake, pancreatic enzymes, and classification of nutritional status.
• A psychosocial assessment for any needs regarding issues with development, school or work, family functioning, social supports, and financial needs. 
• Mental health screening for patients over 12 years old and parents of children up to 18 years old as recommended by the Cystic Fibrosis Foundation. 
• Respiratory therapy evaluation that includes review of airway clearance technique, inhaled medication technique, respiratory equipment, and order of therapies.

Other assessments might include:

• Chest x-ray 
• Bone density (DEXA) scan by age 18; every 1 to 5 years afterwards    
• EKG as needed based on medications
• Quarterly blood tests for the first year on a new CFTR modulator therapy
• Eye exam for all patients on CFTR Modulator therapy

Meet the Cystic Fibrosis Center team

More Information

If you have questions about your appointment please call us at 401-444-3860.