Over the past 50 years, life expectancy of those with cystic fibrosis has increased dramatically — CF is no longer a strictly children’s disease. In fact, today, about 60 percent of those we see at Boston Children’s are adults. Our Adult Cystic Fibrosis Program, a joint program with the Brigham and Women’s Hospital Lung Center next door, is designed to fully address the needs of people with CF throughout their lifespan.
Outpatient care takes place in our pulmonary clinic space at Boston Children’s Hospital, including joint clinics with an adult gastroenterologist and endocrinologist, both nationally recognized. Some subspecialty services are available at satellite clinics. Inpatient care is at our main Boston Children’s/Brigham and Women’s campus.
In adulthood, the focus of care shifts from minimizing lung disease to preventing and addressing emerging non-pulmonary complications of cystic fibrosis, a major priority of our team. Our collaborative team includes pulmonologists, endocrinologists, a gastroenterologist, a dietitian, clinical social workers, and a psychologist, all trained in caring for adults with CF. Several of them are also part of the Pediatric Cystic Fibrosis Program, fostering continuity of care.
Why should an adult with cystic fibrosis come to our joint program at Boston Children’s Hospital?
As one of the oldest and largest cystic fibrosis centers in the United States, we follow patients from childhood into middle age and beyond. Our care team has specific experience and expertise managing the unique health needs of adults with CF, and is equipped to address complex needs as well as routine care and wellness. You don’t have to have been seen here as a child to be seen in our Adult Cystic Fibrosis Program.
Adults in our program have access to a wide range of clinical drug trials — we are regularly ranked #1 in enrollment nationwide. Our patients join a vibrant and supportive community of other adults with CF, with many opportunities to gather for events such as:
- conferences sponsored by the Cystic Fibrosis Foundation
- webchats and discussions of issues affecting the CF community, such as sexuality, aging, mental health, and COVID-19
- educational webinars with a variety of local and national experts, including the director of the Centers for Disease Control and Prevention
- social events featuring guests such as comedian Amy Poehler
Services for adults with cystic fibrosis
- 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
- CF genetic testing
- medical treatments, such as pancreatic enzyme replacement and medications to thin mucus, help breathing, and treat lung infections
- chest physical therapy and 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
- screening and care for problems that may occur in adults with CF, including:
- liver disease
- kidney disease
- hearing loss
- hypertension and heart disease
- liver and lung transplant (in the event of severe organ damage)
- wellness education around nutrition, exercise, bone health, and other aspects of self-care
- reproductive and sexual health care for men and women, including contraception, discussion of fertility options, and care for vaginal yeast infections and menstrual problems
- prenatal and obstetric care, with access to high-risk obstetric care at Brigham and Women’s Hospital and elsewhere based on your insurance
Some services are available at satellite clinics outside Boston; inquire when scheduling your appointment.
Our research in adult cystic fibrosis
As a major hub of the Cystic Fibrosis Foundation Therapeutics Development Network, our center is actively engaged in clinical research in both children and adults with CF, running a variety of drug trials as well as long-term observational studies to better understand health issues in our people with CF. We also have a basic and translational research program aimed at discovering new treatment approaches to CF. Learn about our research.