Children’s National pediatrician and researcher, Lisa Tuchman, MD, MPH, co-authored a new study on cystic fibrosis (CF) care that found patients had a less rapid decline in pulmonary function and no other significant health-related changes after transitioning from pediatric to adult care. The findings of this study contradict reports of negative health outcomes after transition from pediatric to adult care for other chronic childhood illnesses such as HIV and sickle cell disease. The study was published online in Pediatrics, the official journal of the American Academy of Pediatrics.
In this study, Dr. Tuchman and co-author Michael Schwartz, MD, MSCE, Pediatric Pulmonary Medicine & Cystic Fibrosis Center, Lehigh Valley Health Network, retrospectively examined patients using the Cystic Fibrosis Foundation Patient Registry. They identified patients who transferred from pediatric to adult programs (transfer-positive patients) and matched them based on similar baseline characteristics, such as gender, race, age, and CF genotype, with patients who remained in pediatric programs (transfer-negative patients). The authors measured differences in outcomes such as pulmonary function, nutritional status, care use, and home intravenous antibiotic events per year in both the transfer-positive and transfer-negative patients to determine if transfer from pediatric to adult care made a difference.
One of the barriers in transitioning from pediatric to adult CF care among patients and pediatric providers is concern that the quality of adult care may not be comparable. This study begins to close a critical gap in research on the topic of health outcomes and transitioning care in patients with CF that can help guide providers and their transition-age patients. It is the first study on CF to track patients during the time of expected healthcare transition, and compare outcomes with statistically similar individuals who do not transfer care over the same period.
“Our results show that when you look at individuals with CF who are similar in almost every way, when one transfers to adult care and one stays in pediatric care, there are essentially no differences in short-term health outcomes,” said Dr. Tuchman. “With nearly half of all the individuals with cystic fibrosis older than 18, the systematic process of transitioning care utilized by CF programs serves as a model of safe and successful transition. By instituting clear guidelines, resource-sharing and care coordination between pediatric and adult care teams, this model of care can be used to improve transitions for all young adults with special healthcare needs.”