A successful transition program includes the planned and orderly nature of the process, its initiation very early in adolescence, and its emphasis on the preparation of both the patient and the family.
There are multiple differences between the care of adults with cystic fibrosis (CF) and that of children with CF. These differences reinforce the need for the provision of adult care in an age-appropriate setting; they also emphasize the need for programs and protocols that will facilitate and ease the transition of adolescents from their pediatric care settings into the adult care world. This seems obvious, yet multiple barriers to making this transition exist.
Transition is the purposeful, planned movement of individuals with chronic medical conditions from the pediatric-oriented care setting to the adult-oriented setting. This is to be clearly differentiated from transfer, which is merely that point in time at which the care begins in the adult setting. Transition is what is sought, and it is not helpful to perform a pure transfer of care without the transition process that should accompany it.
OBSTACLES TO ADULT CF CARE
While adult care for the large (and still increasing) percentage of CF patients who reach adulthood is clearly necessary, there are barriers to making this transition. These obstacles begin with patients and their families. Logically and understandably, patients and their families have developed very strong bonds with the pediatric care team that has seen them through childhood. They have been working with this team from the time that CF was first diagnosed; they have a long history of trusting this team. There is also a natural fear of the unknown at work (which anyone might feel under similar circumstances). This fear leads people to resist the changes involved in transition. Because they may not know who their adult care providers are, patients are likely to distrust the skills of those providers.
There are many physical reasons for delays in the maturation of adolescents with CF. In addition, there are those patients who exhibit what is sometimes called the Peter Pan syndrome: they are simply not quite ready to grow up and take on adult responsibilities. Similarly, and especially in families where patients exhibit this kind of behavior, parents can become very concerned about losing control over care management, and they are reluctant to let go of that role. In some few instances, there may even be insurance issues that argue against transfer to the adult setting.
Another barrier may be the perspective of the pediatric providers, who are likely to feel strongly bonded with CF patients and their families because they have invested a tremendous amount of skill, expertise, and care in the relationship. They do not want to see any situation arise that is likely to compromise the adolescent’s health. Because they are so attached to their patients, they become very vulnerable to the pleas for extended care made by the patients and families. It may be difficult, as well, for the pediatric care providers to perceive these adolescents as adults because they are seeing their behavior on a day-to-day basis in the clinic. They may, too, have some concern about the skills and the knowledge of the adult providers to whom the patients will be transferred. This is particularly true if they do not know the adult providers well. Depending on the institutional setting, there may even be a fairly significant financial impact due to the loss of a CF patient. In the academic world, this change can also represent the loss of a research subject.
There are barriers on the adult provider side as well; quite frankly, those of us who are adult care providers are not particularly used to—nor, necessarily, particularly good at—dealing with adolescent behaviors. We also come from a very individually focused model of care, and are less used to dealing with families as an entity. We are less likely to be comfortable with a very closely knit interdisciplinary care model. There is also the reality of CF lifespan limitations to be faced: taking on a large caseload of patients who may be approaching the end of life comes with an emotional burden. There may be budgetary implications that create institutional constraints in the ability to accept patients who can be associated with very high utilization of health care.
There is no one model for transition that is ideal or perfect. Multiple models will work. In each setting, the choice of model will depend on a number of factors, including
• the size of the CF population;
• the geographic proximity of the pediatric hospital and the adult hospital;
• the human resources available to take on the care of the patient; and
• whether the institution operates in an academic or nonacademic setting.
Regardless of the format chosen for transition, there are at least three principles that are truly necessary to the success of any program. First, there obviously must be an adult team that is both interested and able to provide care. Second, there needs to be a very well-planned, coordinated approach to the transition. Third, there must be excellent communication and interaction between the pediatric and adult teams.
The responsibility for setting the stage for transition belongs primarily to the pediatric team, and this process needs to start very early in the course of CF care. In fact, ideally, it starts when the CF diagnosis is first made. It represents a wonderful opportunity to begin setting clear expectations for extended survival. At the time of diagnosis, the care team can point out that CF is a chronic disease that requires close management, but that there is every reason to expect the youngster to live into adulthood. The family should, therefore, look ahead to the time when this person will be undergoing transition to the adult care program. This is a message of hope, as well as the setting of an expectation.
These expectations of transfer to the adult program then need to be reinforced at appropriate intervals. One very effective tool is a transition alert letter that can be sent to the patient and family. This step is taken by a number of programs. The letter is usually sent when the patient is 12 or 13 years old, and it may say, for example, “Welcome to the teenage years. Now is the time to start thinking ahead to the day, 4 or 5 years from now, when you are going to be moving over into the adult program. Now is also the time for you to start gradually taking on a little bit more responsibility for your self-care.”
A transition checklist can also be helpful. This checklist should be added to the patient’s satellite chart and should be used by the care team to track the patient’s progress toward assuming more responsibility for self-care. For example, the checklist may monitor the family’s acceptance of the suggestion, made in the transition letter, that patients who have reached the age of 14 years will start seeing the pediatric care team without their parents being present. The letter gives patients these kinds of goals toward which they can move, and the transition checklist monitors whether they have done so.
Another tool that has been used since the late 1980s is a readiness-to-transfer questionnaire. Such a questionnaire is designed to assess the knowledge and self-care skills that adolescents with CF need to possess in order to make a successful transfer to the adult care setting.
One of the key features of making a good transition is creating, at some point close to the time of the actual transfer, an opportunity for adolescents to meet the adult care team. This usually happens through the format of a transition clinic. The transition clinic typically will take place in the pediatric setting, but the adult-care physicians (and, often, some other members of the adult care team) will go to the pediatric hospital to meet CF patients and their families. This type of clinic has proven very helpful as an opportunity for families to ask questions of the team and to air some of their concerns.
Along with this transition clinic, it is helpful to have some written information about the adult program available for patients and their families; this is a very simple thing to do, but it can have a large impact. When transition programs are evaluated, the two most highly appreciated components are often the availability of written information and the presentation of a transition clinic.
It can also be very effective to offer opportunities for adolescents to tour the adult care facility. This is, again, a very simple service to offer that has a significant effect. A tour may be especially important if the two care centers are geographically separated from one another. There are hurdles to be overcome by the patient in seemingly simple areas: getting into the parking lot of a new facility, reaching the medical center, finding the CF clinic, and becoming familiar with the inpatient unit. Many anxieties can be allayed through the provision of these tours.
A technique that has worked well at the University of Washington Medical Center, Seattle, is the presentation of a family CF education day. These are generally day-long programs set up for the parents of children with CF, and they usually include talks by the pediatric CF specialists and the adult CF specialists. In many instances, they will also include speeches made by adult CF patients on a variety of issues. The benefits of these family education days actually are multiple, but the opportunity to hear a lecture by an adult CF specialist gives families the warranted impression that these people are competent, skilled, and knowledgeable. Successful adult CF patients can function as a tremendous role model for adolescents: these are adults doing wonderful things, holding really great jobs, traveling, and having families.
THE TRANSITION PERIOD
Once the stage has been set, the actual time at which transition is going to happen needs to be established. This must be a joint decision involving the care teams, the patient, and the family. The target age of transition typically is 18 years of age; however, it is important to be flexible because some individuals have lifestyles suggesting that they are ready for transfer to adult care much earlier. Others are going to need more time. Generally, an age range of 16 to 21 years is appropriate for transfer.
It should be kept in mind, though, that most pediatric facilities will have a maximum age policy. It is important not to wait until the last minute for transfer. For example, if it is true that a 21-year-old can no longer be admitted to a pediatric facility, then delaying transfer might mean having to complete it (without transition) during an acute exacerbation that calls for admission to the new facility.
The factors that typically influence the age at transfer are the emotional and intellectual maturity of the patient, disease stability, and disease severity. No patient should be transferred in the midst of an acute crisis. Similarly, it is necessary to be aware of how to close end-stage CF the individual is. For example, an 18-year-old patient who is unlikely to survive more than another year or two may choose not to transition at all, but rather continue care with familiar caregivers at the pediatric center until death.
The pitfalls that should be avoided in making transitions are the sudden transfer of care without this process of preparation, transfer during a time of crisis or instability, transfer when the end of life is imminent, and transfer to an inadequately prepared adult care team (which may be defined as a team that lacks the skills, experience, and commitment needed or a team that does not have the necessary resources).
Those factors that are very likely to enhance the success of a transition program include the planned and orderly nature of the process, its initiation very early in adolescence (if not at the time of diagnosis), its emphasis on the preparation of both the patient and the family, and its presentation as a positive milestone to which the patient should look forward. There should also be a target age (usually 18), but flexibility in the enforcement of that transfer age should be maintained. Above all, there must always be a strong focus on communication, not only between the two care teams, but also among the teams, the patient, and the family. N
Gwen McDonald, RN, is coordinator, adult cystic fibrosis program, University of Washington Medical Center, Seattle. This article has been excerpted from “Protocols for Transitioning Adults with CF from Pediatric to Adult Care,” which she presented at American Thoracic Society International Conference Symposium A7, Cystic Fibrosis: Transition to Adult Care on May 7, 2000, in Toronto.