Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views

Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the development of CF-specific transition guidelines, an anonymous pretransition questionnaire and posttransition interview were used to assess the concerns and expectations of 60 CF patients and their parents as they went through the transition from pediatric to adult care. Along with demographic and clinical information, respondents were asked to rate on a scale of 1-5 their general attitude toward, or level of concern on 22 questions involving transition concerns, adult program expectations, and general view of transition. The two most important concerns identified by patients prior to transition to adult care were potential exposure to infection (3.4 +/- 1.3) and having to leave their previous caregivers (3.4 +/- 1.0). Introduction to the adult CF team prior to transition was associated with significantly lower levels of concern in all areas, particularly about having to leave previous caregivers (3.9 +/- 0.7 vs. 2.5 +/- 0.6, P < 0.004). Age, gender, severity of lung disease, and age at diagnosis were not predictive of level of concern for any area. Parents' most significant concern was ability of their child to care for their CF independently, a concern their children did not share (4.0 +/- 1.1 vs. 1.5 +/- 0.5, P < 0.0001). As their most important expectations for the adult program, patients identified ready phone access to a nurse (4.9 +/- 0.6) and education about adult CF issues (4.6 +/- 0.7). The overall attitude toward the development of an adult CF program was overwhelmingly positive for both patients (4.9 +/- 0.7) and parents (4.9 +/- 0.3). By allowing patients to interact with the adult team prior to transition and developing transition protocols which address CF-specific issues like infection control and fertility, successful transition from pediatric to adult cystic fibrosis care can be accomplished.