Cystic Fibrosis is no longer a "pediatric disease" and with advances in treatment and research, people with CF are expected to live into their 30s, 40s and even older. Patients treated for CF are living fuller, longer lives because of the outstanding care by a multidisciplinary team of renowned; pulmonologists, gastroenterologists, allergists- immunologists, respiratory therapists, physical therapists, dieticians, social workers, nurses and a nurse practitioner.
To assist young patients in a successful transition, preparation begins early and includes clinical assessment of the adolescent's self-management skills, the development of an individualized care plan, and patient and parent education sessions and counseling. This takes place while the patient continues to receive uninterrupted, developmentally appropriate and psychologically sound health care.
Physicians from the pediatric care team work hand-in-hand with adult pulmonologists to provide coordinated, specialized care as patient's transition to an adult care setting. Both pediatric and adult pulmonologists regularly communicate and consult on cases, before transition, and after. Doctors, nurses and nurse navigators work together in transition to assist young adults in becoming adults who are responsible for their own care.
Treatment and Evaluation
Adult care pulmonologists on staff who closely monitor lung function, weight and other patient data. There is a focus on early intervention to maintain and improve lung function through patient education, infection control and optimal airway clearance techniques. In addition, there is a dedicated adult CF respiratory therapist and nurse practitioner to coordinate care across the continuum. MemorialCare also participates in ongoing research projects on inpatient adherence and outcomes and patient knowledge assessment surveys.
Education and special attention to nutrition is vital to the treatment of CF and has the potential to add years to a patient's life expectancy. A gastroenterologist is involved in the treatment plan and will see patients at each appointment along with the CF registered dietician to support dietary and nutritional needs of the patients who have nutritional failure.
In addition to nutrition, Body Mass Index (BMI) is tracked closely to stay in accordance with the Cystic Fibrosis Foundation guidelines. The BMI tracking is done in conjunction with the forced expiratory volume measure to improve lung function. Good nutrition, weight management and lung function are closely tied to positive outcomes. Having these in check are important to being successful in a comprehensive treatment plan.
Exercise and Activities
A treatment plan for a CF patient also involves close monitoring of exercise. A physical therapist (PT) is involved in the care of adult CF patients, which is another unique feature of the treatment plan. The PT will customize strategies and individualize therapy making it unique to each patient.