The Pediatric Cystic Fibrosis Program at Boston Children’s Hospital provides diagnostic services and coordinated care for infants, children, and adolescents with cystic fibrosis (CF). Our specialists work as a team to maximize children’s lung function, nutrition, and quality of life. We also watch for and care for conditions that sometimes develop alongside CF. Our care team includes pulmonologists, endocrinologists, gastroenterologists, dietitians, physical therapists, nurses, social workers, and clinical psychologists. Visits to our CF Clinic are available at Boston Children’s main campus and in Waltham, and some specialty services are available at our various satellite locations.
Why choose our Pediatric Cystic Fibrosis Program for your child?
The Pediatric Cystic Fibrosis Program is accredited by the Cystic Fibrosis Foundation for its comprehensive, high-quality care and is recognized as a leader throughout the country. As one of the oldest cystic fibrosis centers, our clinical team has broad and extensive experience in CF and its health complications, and provides coordinated care.
A focus on outcomes, with family partnership
We take a team-centered approach that includes weekly team meetings and frequent opportunities for adolescents and families of younger children to participate in care decisions. To ensure the best outcomes, we share data with the CF Foundation Patient Registry, comparing notes on lung function, infections, mental health, nutrition, disease flares, and medications. Our dedicated quality improvement team, a founding member of the national CF Learning Network, meets regularly and participates in numerous quality improvement collaboratives. Families and older children are key participants in these efforts.
Research
Boston Children’s is a lead center in the Cystic Fibrosis Foundation Therapeutics Development Network, enabling us to enroll children and adolescents in a variety of clinical drug trials and other studies aimed at improving long-term health. We care for the whole child, and we conduct ongoing quality assurance programs aimed at minimizing symptoms and maximizing quality of life.
Transition to adult care
Our care team works closely with clinicians in the Adult CF Program, run jointly with Brigham and Women’s Hospital next door, to ensure that your child’s health issues are addressed as they get older and enabling adolescents with CF to gradually transition to adult care. We work closely with families to identify the right time to transition to adult providers and adult hospital care.
Several pediatric team members also work with our adult program, easing the transition process. To help your child prepare, clinic visits will cover how to schedule appointments, how to communicate with the Cystic Fibrosis Center, what routine care will be needed, what to do in the event of illness, and how to request prescription refills. We also cover sexual and reproductive health, and tips for healthy eating and exercise.
Community
When children and their families come here for their cystic fibrosis care, they also become part of a community of families that are invited to social events, virtual chats, speaker presentations, and more. We can also connect you with support groups and CF community organizations.
Services for children with cystic fibrosis
We offer a full range of coordinated services for children with CF and their families. These include routine check-ups at least four times per year; visits with a dietitian, social worker, and physical therapist; and routine screenings. Specific services include:
- Diagnostic testing
- Sweat testing to determine levels of salt in your sweat
- Throat and sputum cultures
- Blood work
- Chest X-rays and chest CT scans
- Pulmonary function tests to see how well your child’s lungs are working
- Bronchoscopy to examine your child’s throat, larynx, trachea, and lower airways
- CF genetic testing
- Pulmonary care
- Chest physical therapy to help loosen and clear lung secretions
- Training in airway clearance techniques
- IV antibiotic therapy
- CFTR modulators to restore function of the CFTR protein
- Home IV therapy
- If you or your child are eligible for early hospital discharge, IV therapy can be completed at home in consultation with your inpatient care team.
- Health screenings, including
- Oral glucose tolerance tests to screen for CF-related diabetes
- Screening for CF-related liver disease
- Bone health monitoring
- Mental health screenings
- Nutrition support and care, such as:
- Nutrition counseling and education
- Pancreatic enzyme replacement
- Care for digestive problems
- Support and counseling
- Education on home care and avoiding infections
- Emotional support
- Help in managing CF at school
- Advanced care, such as liver and lung transplant (for severe organ damage).
Some services are available at Boston Children’s Waltham and other satellite locations; inquire when scheduling your appointment.