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 to an adult program include a transition program. Our goal was to assess the current status of transition programs in US CF centers. In addition, we sought to determine the problems related to the transfer of patients to adult programs as perceived by CF center program directors. A survey was sent in 1998 to 110 pediatric and 44 adult program directors at CF centers approved by the Cystic Fibrosis Foundation (CFF), with a response rate of 65.5% and 72.7%, respectively: 22.2% of pediatric centers reported having a non-CFF-approved adult program, and 38.9% had no specific adult program. About one fifth of pediatric centers cited lack of an adult CF physician as an impediment to establishing an adult program. Age (82% of programs; mean, 18.5 years), but not marriage (17.1%) or pregnancy (24.8%), was used as a criterion for transfer. Criteria precluding transfer included patient/family resistance (51.4%), disease severity (50.5%), and developmental 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 half 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 directors. We conclude that there is a lack of standardized programs for transfer of CF patients from a pediatric to an adult care setting, and that there are differences between pediatric and adult program directors' perceptions of concerns that CF patients, their families, and the medical teams have about transfer. These differences may impede the successful transition of patients into an adult program.

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.

We previously surveyed cystic fibrosis (CF) center directors and adult patients with CF to assess their perceptions regarding transition from a pediatric to an adult setting. An important finding in those studies was a lack of standard programs for transfer of young adults with CF from pediatric to adult care settings. Patients with CF typically receive care from clinics utilizing a multidisciplinary approach, suggesting that every member of the CF team can impact the transition process. Our purpose in this study was to gain an appreciation for various team members' perspectives on transition. An Internet survey was offered to all CF centers across the country to be completed by team members, excluding physicians. We received 291 completed surveys, nearly half completed by nurses, but our respondents included social workers, nutritionists, respiratory therapists, and a few team members with other training. Nearly half of the respondents work for both pediatric and adult teams. The majority of respondents (71.8%) reported that their adult patients receive care from an internist in a separate adult program, but nearly 20% reported that a pediatrician follows their adult patients. A minority thought that age (37.4% of respondents), marriage (16.2%), and pregnancy (27.1%) were criteria for transfer, though most (86.2%) suggested that patients should be transferred by age 21 years. Criteria precluding transfer included patient/family resistance (45%), disease severity (34%), and developmental delay (31.3%). It was uncommon (11.4%) for an introduction to the concept of transition at the time of diagnosis. Over one-half of patients did not meet the adult team until time of transfer. Team members' perceptions of patients' concerns were similar to what we had previously measured in physicians, again far greater than what we have measured in patients themselves. In many ways, what we have measured here in team members reflects what we have reported by physicians, demonstrating slow development of standard transition programs and an overestimate of patients' concerns regarding transition. These differences may impede the successful transition of patients into an adult program. It is clear from this study that team members have an interest in and opinions on transition, and are likely play a vital role in the transition process. Standard programs of transition should be developed, and team members should be engaged in that process.

We found that pain and poor sleep quality are reported in a majority of adult CF patients and there is a strong correlation between the two. This will have important clinical implications in the evaluation and treatment of adult patients.

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