The Pediatric Cystic Fibrosis Program at Nationwide Children’s Hospital follows patients from diagnosis through transition to our Adult Cystic Fibrosis Program. Care begins with diagnosis, whether this occurs during early infancy via newborn screening, or later in childhood. Our team approach allows patients and families to have access to subspecialty physicians, nursing, nutrition, social work and psychology staff, who are trained in cystic fibrosis care, at each clinic visit. Our location provides easy access to patients in Ohio, West Virginia and Kentucky.
Our pediatric cystic fibrosis team works with patients and families to combine state-of-the-art diagnostic testing with observations of symptoms to maintain all aspects of health during childhood and adolescence. Physical health is evaluated usually at intervals of 2-3 months via patient and/or family reported changes in symptoms, a physical exam by physicians and diagnostic testing. We offer pulmonary function testing, whether infant PFTs or traditional PFTs, chest imaging such as x-rays and chest CT scans, respiratory cultures, annual laboratory screening, and audiology.
Emotional wellness of patients and families is evaluated and supported by the availability of social work and psychology. Programs such as our pediatric to adult transition program and Cystic Fibrosis Patient Family Advisory Board (PFAB) include emotional well being in their goals. We are also part of the Cystic Fibrosis Therapeutic Drug Network (CF-TDN), which allows our patients to be part of upcoming clinical trials, and access to newly-developed therapies.
Each year, approximately 500 children with cystic fibrosis are admitted to Nationwide Children’s Hospital where they are seen by our pediatric cystic fibrosis providers who will help them get better and home sooner. Cystic fibrosis inpatient care, for children ages birth to 18, as well as adults, is through a multidisciplinary care model. Our inpatient unit provides specialized care for pulmonary patients and their families helping them to overcome any medical issues they face throughout their life. As a patient admitted to our unit, you will meet physicians, nurses and respiratory therapists who are all focused on the care of the patient with cystic fibrosis. Child life specialists, recreation, massage, physical, occupational therapists and teachers may also be a part of your medical team.
We are focused on providing appropriate pharmacotherapy, with the aid of our pharmacy staff, as well as daily chest physiotherapy based on the standard of care for patients with cystic fibrosis. We also provide expert education to patients and families since many of our staff have devoted the past 20 years to cystic fibrosis care. Since our care is family centered, you and your child are key members of the team. Each day you will be part of the team helping to make medical decisions for your child while you work closely with our staff.
We see approximately 60-80 patients per week in our Tuesday, Wednesday and Thursday afternoon clinics; we also offer an additional clinic on Wednesdays for newborn cystic fibrosis patients. Learn more about cystic fibrosis outpatient clinic services.
Our Cystic Fibrosis Center is made up of several groups involved in cystic fibrosis care including physicians, nurses, nutrition, social work, respiratory therapy and genetics. Read how these cystic fibrosis services can benefit your family.
The Cystic Fibrosis Transition Program is designed to help patients overcome the hurdles of childhood and adolescence with a chronic disease. It will also help our patients develop into independent adults who are informed about cystic fibrosis and are able to care for themselves and manage all aspects of their health care.
Cystic fibrosis care and therapies can sometimes be provided at home. We evaluate our patients, who may need intravenous (IV) antibiotics, to determine if they and their families may benefit from therapies at home instead of at the hospital. Learn more about home therapies for cystic fibrosis.
The state of Ohio currently includes screening for cystic fibrosis on its’ newborn screening cards with testing performed on all children born in the state of Ohio. Infants who are screened as possibly having cystic fibrosis are referred to various centers across the state including Nationwide Children’s Hospital. Read about cystic fibrosis newborn screening.