Health outcomes associated with transition from pediatric to adult cystic fibrosis care

Abstract

Background: Almost half of individuals who have cystic fibrosis (CF) are over 18 years old, thus safely transferring patients from pediatric to adult care is a priority. The purpose of this study is to compare youth transferred from pediatric to adult CF care versus those remaining in pediatric CF care and quantify the relationship between transfer status and health outcomes.

Methods: Patients who transferred from pediatric to adult CF care were identified from the CF Foundation Patient Registry from 1997 to 2007. Transferred patients were compared with individuals who have similar baseline characteristics who remained in pediatric care throughout the same time period. The main outcome measures include pulmonary function, nutritional status, care use, and home intravenous antibiotic events per year. A propensity-matched analysis was performed.

Results: Fifty-eight percent of patients remained in pediatric programs throughout the study period. The mean age at transfer to adult care was 21.2 (1.3) years. In the 2 years after transfer there was a less rapid decline in percent predicted forced expiratory volume in 1 second of 0.78 percentage points per year among transfer-positive patients compared with transfer-negative ones (95% confidence interval; 0.06-1.51); there were no other significant health related changes.

Conclusions: The current study contradicts reports of other chronic childhood conditions, in which transfer between the pediatric and adult health system was associated with adverse health outcomes. Further research is needed to explore the long-term relationship between transition practices and health status outcomes to establish a systematic, evidence-based transition process.

Keywords: adolescent health services; cystic fibrosis; outcomes assessment; transition to adult care; young adult.