Cystic Fibrosis Program - Pediatric
Cystic fibrosis (CF) is a chronic disease that affects approximately 30,000 children and adults in the United States. This inherited disease produces thick mucus that makes breathing difficult, causes lung infections, and often prevents normal digestion. Cystic fibrosis is considered a life-shortening disease, but advances in care have increased survival into adulthood, and even more promising new therapies are being developed.
Our Pediatric CF Program and Adult CF Program are the oldest and largest CF Programs in Arizona. We provide comprehensive care to nearly 500 individuals with cystic fibrosis ranging in age from infancy to well past 60 years of age. Our patients come from all areas of Arizona as well as out-of-state.
CF Care Center
Outcomes for individuals with cystic fibrosis are optimized at when care is received at an accredited CF Care Center. These care centers have specially trained CF providers and a dedicated CF support team. Our CF Care Center is accredited by the Cystic Fibrosis Foundation. In addition, our Pulmonary Division is one of the 10 specialties ranked by the U.S. News & World Best Children's Hospitals.
Our CF team takes a proactive, family-centered approach to caring for children and adults. Our multidisciplinary team of specially trained doctors, nurses, respiratory therapists, dietitians, social workers and other specialty providers work with your family to develop an individualized care. This includes focusing on routine visits, early identification of problems related to CF, family/patient/community education, maintaining mental and emotional health and how to approach living life with CF.
Our Family Education Day is used to update our families about clinical and basic research trends, advances in clinical care and other current and practical topics. Team members help organize support groups for caregivers and family members. The CF Family Advisory Council (FAC) works with the CF team to identify issues important to patients and families.
Pediatric CF Program
Our Pediatric CF Program cares for children with cystic fibrosis from infancy though early adulthood. The team assists with interpretation of Arizona newborn screening results, confirmation of diagnosis, acute and chronic medical care, and health care maintenance. Because cystic fibrosis affects other organs in the body, our Pediatric CF Program holds combined clinics with other sub-specialties, including Gastroenterology, Endocrinology, and ENT (Otolaryngology).
Since CF is a lifelong disease, we see our patients and families for many, many years. As partners in care, we listen to your concerns and work with you and your family to make the best choices about medicines, diet, exercise and other therapies. Because there are many social, emotional and cultural needs our CF patients and families have, we work together to provide comprehensive and compassionate care tailored to you and your family’s needs. Our team partners with pediatrician providers within the CF community to address the need for transplant referral and evaluation as well as post-transplant CF care.
Transitions and Adolescence
The Cystic Fibrosis Center at Phoenix Children’s Hospital also recognizes natural transition times in infancy, toddler years, school-age years, preadolescence, adolescence and early adulthood. Our team encourages active preparation for these transitions, and involvement of patient, family, and members of the CF team. Objectives include fostering age-appropriate independence, self management of CF care, taking CF treatments and therapies, navigating life with CF and obtaining a strong understanding of CF. We believe transferring the responsibility of CF care from parents to patient in a structured and carefully managed way, in partnership with the clinic, can ensure the development of a successful independent young adult living with CF. Because the Pediatric and Adult CF Programs share facilities and some resources, we work toward minimizing disruptions of care related to transition from Pediatric care to Adult Care.