Arkansas Children’s Hospital is the only Pediatric Cystic Fibrosis center in the state accredited by the national Cystic Fibrosis Foundation. We provide high-quality, specialized care to patients from comprehensive diagnosis to ongoing treatment.
A CF center is different from a regular Doctor’s office because a CF center is lead by a pulmonologist with a complete team of healthcare professionals including a specialty nurse, respiratory therapist, nutritionist, and social worker who are specialized in managing CF. A CF center provides experience in the current therapies for cystic fibrosis and follows the guidelines established by the Cystic Fibrosis Foundation. The CF center is inspected and re-accredited approximately every 5 years by the CF Foundation to ensure standards of care.
The CF Foundation recommends regular check-ups at the CF center every month for children up to one year of age, then once every three months thereafter. These routine appointments are important to pick up changes or problems and provide treatment before irreversible damage occurs. Statistically, people with CF who follow up with their physician routinely have better outcomes with longer survival. So, it is important for a CF patient to keep appointments, even if they appear to be doing well.
Pulmonologist – see “Meet the CF Team”
Specialty Nurse – coordinates the plan of care outlined by the physician and other team members. They work closely with families and provide a source of support for patients and family members during diagnosis, increased therapy, and death. They act as educators on disease and treatments, help with admissions, arrange equipment in the home, refill prescriptions, coordinate procedures, and help with the transition into adult health care programs. The nurse plays a key role in communication between families and physicians.
Respiratory Therapist – the RT is primarily responsible for the respiratory care of the patient. Airway clearance therapy (ACT) is the mainstay of respiratory care. The objective is to loosen mucus and remove secretions from airways. Aerosol inhalation therapy is used in conjunction with ACT. The RT will help provide direct care to patients, instruct patients and families on the use of airway clearance devices and therapy techniques for home use, review the proper administration of aerosol therapy and arrange for equipment needed in the home (nebulizers, compressors), pulmonary function testing, and provide ongoing education.
Nutritionist – Maintenance of good nutrition is very important. The nutritionist is responsible for providing dietary management for each patient based on the degree of pancreatic insufficiency. In infants and children, adequate nutrition is necessary for normal growth and development. The nutritionist instructs on the use of predigested formulas, supplemental vitamins, and administration of pancreatic enzymes. A nutritionist also teaches nutritional principles in regards to dietary needs; the family’s eating habits, financial situation, and cultural background.
Social Worker – psychosocial issues exist for both patient and family, especially during crises such as diagnosis, hospitalization, intensification of care, and end of life. They emphasize the importance of medical therapy, evaluate a family’s ability to cope, determine therapeutic interventions, help in obtaining financial assistance, provide guidance in education or career choices, help transition patients to independent care, and act as emotional support.
The Arkansas Children’s Hospital Cystic Fibrosis Center offers information on this Web site as a courtesy for educational purposes only. As medical information changes rapidly, we make no statements or guarantees of accuracy or completeness of the information provided. The information presented is considered an educational resource and is subject to change without notice. This internet site may provide links or reference resources to other websites as a convenience, but has no responsibility for the content on such other sites. Under no circumstances should the content presented be considered the same or as a substitution for a physician’s medical advice or care. Should you find information believed erroneous, please contact us at (501) 364-1006.