Transition programs in cystic fibrosis centers: perceptions of patients

Abstract

There is a growing population of adults with cystic fibrosis (CF) and a need for development of adult CF programs. Recommendations for transfer of patients from pediatric care to an adult program include a transition program. The purpose of this study was to survey adult CF patients to assess their own concerns regarding this issue. A survey was sent to all 1,288 members of the International Association of Cystic Fibrosis Adults (IACFA), with a response rate of 25.9% (n = 334). The majority of patients (81.2%) received care from a CF center; the major difference between those seen at a CF center and those seen at another facility was proximity to a CF center. Nearly one-fourth of patients seen at a CF center continued to receive care from a pediatrician even though a CF-trained internist was available; though these patients were younger, their mean age was still about 30 years. Patients seen by a pediatrician were more like to be students and to live with their parents. Those patients seen in an adult program described a variety of criteria for their transfer to the adult pro-gram, but there were no consistent findings to suggest a standard transition program. Indeed, many patients did not meet the adult team until the time of the transfer. Most importantly, the patients reported their level of concern about transfer as minimal, far less than what CF physicians had perceived. These differences may impede the successful transition of patients into an adult program.