Evaluation of a cystic fibrosis transition program from pediatric to adult care

Purpose As the cystic fibrosis (CF) patient population median survival increase, the need for transitioning their care to adult care centers increase as well. We have a structured transition program since the early 1980s. The purpose of this study is to evaluate the experiences and opinions of patients in our adult CF center who went through a formal transition versus those who did not, in an attempt to evaluate the overall process and to identify means for improvement. Methods A questionnaire was given to adult CF patients at the University of Michigan during a clinic visit or inpatient hospitalization, after consent was obtained. Inclusion criteria included diagnosis of CF in childhood, previous care in a pediatric center, and current participation in our adult CF clinic. Results A total of 91 patients completed the questionnaire. 44 went through our structured transition program. On average, patients who participated in a formal transition process had higher satisfaction with both CF programs, perceived health status, and independence but no differences in their level of anxiety about transferring to the adult program. Patient opinions regarding when to transfer care were considered more often in patients who participated in a transition program (88% vs. 62% and P=0.02). Conclusion Although structured transitions programs do not appear to decrease patient anxiety during this stressful period, it does appear to improve patient satisfaction, perceived health status, and independence. These findings suggest that establishing a transition program could be important in optimizing patient health, continuity of care and improving adherence. Pediatr Pulmonol. 2013; 48:658-665. (c) 2012 Wiley Periodicals, Inc.