A Study of the Transition Process

“…transfer can be stressful.”

The transfer from a pediatric to an adult care setting is an event experienced by all persons, but is generally not a difficult event for those without health problems. For the person who has chronic disease, such as CF, and who has developed a close and trusting relationship with a pediatric team, the transfer can be stressful. Many have advocated for transition programs to prepare patients for the eventual transfer to the adult team.

In order to develop a transition program that would deal with these potential obstacles effectively, it is necessary to understand the potential hurdles to successful transfer to an adult program. Obviously there must be a trained internist to assume care of the patients. Apprehensions by any of the parties involved, the patient, the patient’s family, the pediatric team, or the adult team, can cause conflict and adversely affect the transition process. We sought to better understand these hurdles to the transition process.

“…no evidence of a standard program of transition.”

We first surveyed CF physicians, both pediatricians and internists, regarding their perceptions of obstacles to transfer (Flume et al., Pediatr Pulmonol 2001; 31: 443-450). At that time, there were 110 CF centers approved by the Cystic Fibrosis Foundation, 44 of which had approved adult programs. We had a response rate of approximately 67%. Nearly 40% reported that they had no adult program at their center and 22% stated that the primary reason was the lack of support for an internist with an interest in CF. The most common reason for transferring a patient was age; most suggested that 18 years of age was an appropriate time for transfer. Less than 20% said that they would transfer patients because of marriage or pregnancy. Nearly 50% said that they would not transfer the patient if there were resistance by the patient or the family, nor would they transfer patients who had very severe disease. The introduction of the patient to the adult team often did not take place until the time of transfer. We found no evidence of a standard program of transition.

We asked the physicians to rate their perceptions of the concerns of patients, the patients’ parents, the pediatric team and the adult team to a number of specific issues. In general, the pediatric physicians rated the concerns of all groups higher than did the internists. Interestingly, they rated the patients as having moderate concerns for most issues, including unfamiliarity with the adult staff, strong relations with the pediatric staff, reluctance to leave the pediatric setting and difficulty assuming control (see Figure 1), yet rated their own concerns as very mild with respect to the adult team’s ability to meet the patient’s medical, developmental and emotional needs. In addition, the pediatricians reported their concerns about the perceived loss of the patient as mild.

Figure 1

Figure 1: Ratings of patient concerns as reported by adult patients (seen either by a pediatrician or an internist) and by CF physicians. Rating scale is 0-3, where 0 = no problems and 3 = severe problems.

We then surveyed adults with CF regarding their own perceptions of these same concerns (Anderson et al., Pediatr Pulmonol 2002; 33: 327-331). We surveyed the entire membership of IACFA, sending surveys all over the world. Most patients received care from a CF center, although several received their care from a physician not affiliated with a CF program, the principle reason being that there was no CF center nearby. For those patients who were not seen in an adult program, the principle reason was that none was offered, accounting for nearly 50%. We asked the patients to describe their own transition experience. Nearly half of the patients did not meet the adult team until the time of transfer, again suggesting that there are not standard programs of transition in the CF community. This does not mean that there are not successful transition programs at some centers, just that physicians and patients overall are not describing a standard program.

“…patients rated themselves as having almost no concerns…”

We asked the patients to rate their own concerns about the same issues that we had addressed to the CF physicians and the patients rated themselves as having almost no concerns regarding these issues (see Figure 1). The results did not differ between patients who received their care from an internist or a pediatrician. Our conclusion was that either CF physicians (especially the pediatricians) are over-rating the concerns that their patients have about transferring to an adult program or that they are projecting their own personal concerns onto the patients.

We also asked patients to rate the importance of a transition program, which they rated as between moderately and extremely important. It is my conviction that a transition program is in the best interest of the patient, the family and the CF team, making for a smooth transfer to an adult program. The critical elements of a transition program are not clear, but those that I feel are most important are:

1. All members of the CF team should be unified in their belief in the need for transfer of the patient to the adult setting. We most recently surveyed non-physician CF team members for their views on transition, as we believe that team members can facilitate or hinder a successful transfer. The results of this study were presented at the 2002 North American Cystic Fibrosis Conference (Paediatr Pulmonol 2002;34 (Suppl): 352). We found that team members generally support transition and their opinions regarding transition mirror those of physicians.

2. There should be close communication between the pediatric and adult team. One individual from each team should be given the responsibility of keeping up with the transition program. This is best handled by a co-coordinator whose tasks are to prepare for future events.

3. The discussion of eventual transfer to the adult program should begin as early as possible. At our center all new patients meet the adult team as early as possible. This means shortly after a new diagnosis or after a child is transferred to our center. There is no participation in care by the adult team during this visit; rather, we are there to deliver one message to the parents, which is that we take care of adults with cystic fibrosis. As the parents learn more about CF we want them to recall that children with CF do indeed grow up and lead adult lives.

4. There should be periodic reinforcement of the transition. We reinforce the transition process at about the age of 14. The adult team re-visits the patient and parents not to participate in healthcare decisions so much as to reinforce the plan for their eventual transfer to the adult program. Active participation of the adult team in some of the treatment issues does not begin until age 16, though the pediatrician remains in charge.

5. Transfer to the adult clinic should occur at a natural time. For us, this follows the patient’s graduation from high school, which is typically at the age of 18.

6. Finally, transfer should occur for all patients, even for patients who have very severe illness. This is to assure that some patients do not single themselves out as being even more different from their peers.

“…a normal part of everyday life.”

We have learned a great deal from our study of the transition process. Perhaps most important is that we as physicians overestimate the fears and concerns of our patients. We should not hinder the maturation of the young adult with CF and we should allow them to progress into independence and adulthood, just as we are asking their parents to do. Both teams need to be committed to the process, maintain careful communication, and eventually, it is my hope that the discussion of transition will no longer be important to CF centers, as it will be a normal part of everyday life.

Patrick A Flume M.D.
Departments of Medicine and Pediatrics
Medical University of South Carolina
812-CSB 96 Jonathan Lucas St.
Charleston
SC 29425
USA