Transition programs in cystic fibrosis centers: Perceptions of pediatric and adult program directors

There is a growing population of adults with cystic fibrosis (CF) and a nee d for development of adult CF programs. Recommendations for transfer of pat ients to an adult program include a transition program. Our goal was to ass ess the current status of transition programs in US CF centers. In addition , we sought to determine the problems related to the transfer of patients t o adult programs as perceived by CF center program directors. A survey was sent in 1998 to 110 pediatric and 44 adult program directors a t CF centers approved by the Cystic Fibrosis Foundation (CFF), with a respo nse rate of 65.5% and 72.7%, respectively: 22.2% of pediatric centers repor ted having a non-CFF-approved adult program, and 38.9% had no specific adul t program. About one fifth of pediatric centers cited lack of an adult CF p hysician as an impediment to establishing an adult program. Age (82% of pro grams; mean, 18.5 years), but not marriage (17.1%) or pregnancy (24.8%), wa s used as a criterion for transfer. Criteria precluding transfer included p atient/family resistance (51.4%), disease severity (50.5%), and development al delay (46.7%), The concept of transfer is introduced to the patient and family at the time of diagnosis in a minority (14%) of programs. Over one h alf of the patients did not meet the adult team until the time of transfer. Pediatricians reported higher perceived parent, patient, pediatric staff, and adult staff concerns about transition issues than did adult program dir ectors. We conclude that there is a lack of standardized programs for transfer of C F patients from a pediatric to an adult care setting, and that there are di fferences between pediatric and adult program directors' perceptions of con cerns that CF patients, their families, and the medical teams have about tr ansfer. These differences may impede the successful transition of patients into an adult program. (C) 2001 Wiley-Liss, Inc.