Developing a Transition Program from Pediatric- to Adult-Focused Cardiology Care: Practical Considerations

Until recent decades, the majority of infants born with congenital heart defects did not survive to reach adulthood. With such pessimistic mortality expectations, it was understandable that individuals with congenital heart disease (CHD) would be followed by pediatric cardiologists throughout their lives. However, due to advances in the diagnosis and treatment of CHD, it is now estimated that over 90% will reach adulthood.1, 2 As a result, there are currently at least equal numbers of children and adults living with CHD.3 Improved survival expectations have contributed to an international movement favoring the transition of CHD patients from pediatric-focused to adult-centered cardiology care.4-7 An optimal transition process provides uninterrupted health care and emphasizes patient education and empowerment. The importance of a thoughtful and coordinated transition from pediatric- to adult-focused cardiology care has gained increased attention.8-10 While there is general consensus of the rationale for the transition of patients with CHD, practical information is less available. This article aims to (1) review the concept of transition, including the definition, rationale, timing, and domain of responsibility, and (2) present practical strategies to assist with the implementation and enhancement of transition services. Strategies target both developing and existing transition programs. As there is a paucity of CHD-specific transition research, studies from other health conditions are included as appropriate. Transition is not synonymous with the transfer of medical care. Transfer is typically considered an event, whereas transition is conceptualized as a process. Transfer of care refers to the movement of patients and their care from one medical facility or provider to another. In some countries, the health care system mandates that patients are discharged from pediatric care at a specified age. Transition, in contrast, refers to a shift in the responsibility of health care management from the family to the patient. It is a thoughtful and gradual process that is best initiated several years prior to transfer of care and continues following transfer. It has been defined as the "purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems."11 The goal is to "provide uninterrupted health care that is patient-centered, age and developmentally appropriate, flexible, and comprehensive."9 Although transition should not be equated with transfer of care, the two concepts are not unrelated. Transfer of care is typically, although not always, part of a successful transition. Furthermore, the effectiveness of transition can impact whether successful transfer occurs. For example, one of the significant predictors of follow-up at a specialized adult CHD (ACHD) center is attendance at pediatric cardiology appointments without parents or siblings (an indication that health care responsibility has shifted to the young patient).12 Kieckhefer and Trahms present a shared management approach to transition that includes developmental and leadership considerations.13 In this model, patients first enters the medical system as children who receive care. As patients age, they become providers of certain aspects of self-care, then progress to become managers and later supervisors of their care. Eventually, patients are considered to be "CEOs" of their health care when they have assumed health care responsibility. Within this management model, there is a corresponding gradual shift in the role of parents. Although parents might enter the model as CEOs of their child's care, they gradually assume less responsibility over time. This shared management model illustrates the changing roles of both patients and parents and requires support within the care health care system. There are at least two strong reasons to focus on the transition from pediatric to adult-focused cardiology care. First, transition toward increased responsibility over health care decision making does not occur in isolation. Rather, it impacts and is impacted by other experiences associated with adolescence and young adulthood. This phase of life is linked with increased social independence, developing romantic relationships, and the pursuit of educational and career options. Erikson described the primary psychosocial conflict of adolescence to be "identity vs. identity confusion."14 During this stage, adolescents transition between childhood and adulthood and attempt to develop a sense of identity and an understanding of their roles in society. The term "emerging adulthood" has been used to describe the stage between 18 and 25 years.15 Individuals in this age group have a sense of having left adolescence but not yet having fully reached adulthood.15 This feeling may be more prominent among young adults who have grown up with chronic diseases because they typically achieve fewer vocational, psychosexual, and social developmental milestones or achieve them at an older age than their healthy peers.16, 17 Two factors are most relevant for the process of reaching adulthood: (1) accepting responsibility for one's self, and (2) making independent decisions.15, 18 Accepting responsibility, decision making, and individual identity are also relevant to the transition from pediatric- to adult-focused care. The second reason to focus on transition relates to the goal of health optimization through consistent medial care.19 The American Academy of Pediatrics identified this goal "to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood."20 Well-informed patients are expected to recognize the importance of uninterrupted health care21 and thus medical sequelae would be detected and managed sooner. Yeung et al. investigated lapses in care among adults with CHD22. In patients with defects of moderate or great complexity, 63% had lapses in care of 2 years or longer. Patients with lapses of care were more likely to be symptomatic, receive new cardiac diagnoses, and require urgent cardiac intervention; one-third of patients with lapses recalled being told that cardiac follow-up was not required.22 Another study showed that the likelihood of admission to hospital through emergency departments nearly doubled during the transition period and was more common among uninsured patients or those with public insurance.23 Furthermore, in 21- to 44-year-old patients with CHD, the majority of CHD surgical hospitalizations occurred in hospitals that average <5 congenital heart surgeries per year.23 These findings highlight the need for better education regarding adult care, earlier recognition of symptoms, and regional ACHD centers. At a minimum, young patients with defects of moderate or great complexity must be informed of the need for regular follow-up in adulthood. There exists no single "right" time or age for transition or rigid age limit defining child vs. adult services.24 The ongoing process of transition might begin at the time of diagnosis and end following transfer to an adult care facility.25 The transition of CHD patients should start by adolescence around the age of 12 years.26, 10 A gradual process toward establishing autonomy, understanding one's cardiac anatomy and health status, and becoming aware of relevant lifestyle issues is recommended.7"Envisioning a future" has been identified as an important first step in the transition process for individuals with special health care needs or disabilities.27 Reiss et al. recommended "starting early,"27 which can be assisted with the creation of a written health care transition plan.20 An earlier start can lead to more successful transition. For example, in patients with cystic fibrosis, initial discussions regarding transition typically began at 17 years and patients were transferred at 19 years; there was limited time to develop important self-care skills.28 Although age of transfer is mandated in some countries, ideally, the timing of transfer would be flexible and depends on a patient's chronological age, medical and developmental status, adherence to therapy, maturity and independence, the preparation and readiness of both patient and family, and the availability of appropriate adult health care providers.19, 29 Adolescents and young adults with CHD and their parents prefer the transition process to be individualized to each adolescent.30 Transition and education regarding self-management should not culminate with transfer to adult care, and ought to continue through the period of emerging adulthood to address ongoing changes. Poor knowledge among ACHD patients regarding birth control, pregnancy, and genetic counseling, as well as the continued need for vocational and employment advice, highlight the importance of ongoing education during adulthood.31-33 Preferably, all health professionals caring for patients with CHD would be involved in the transition process. This includes (1) general pediatric health care providers who transfer their patients to adult health care providers, (2) physicians, advanced practice nurses, and physician assistants in the pediatric cardiology setting, and (3) adult health care providers. Clearly, the process of transition begins in the pediatric setting. However, as transition refers to the shift in health care responsibility from the family to the patient, ACHD providers are not excused from this responsibility; ongoing transition-focused services are often important. In pediatric and adult care settings, it is often nurses, nurse practitioners, and other midlevel providers who provide crucial transition services.34-36 Internal medicine/pediatric cardiologists who continue to follow their pediatric patients into adulthood are not exempt from the transition process. They should provide education and foster independence among the patients they continue to follow into adulthood. Therefore, even patients who continue to see the same health care providers for their CHD care should undergo a process of transition. This is similar to the care provided by family practitioners or internal medicine/pediatric specialists who transition their patients with no plans to transfer care out of their practice.37 There are several potential obstacles during the transition process including expectations and behaviors of patients, families, and health care providers. During the period of transition, patients unlearn pediatric adaptive behaviors and strategies and learn new "adult system" behaviors. They may have concerns about building new relationships with providers and receiving appropriate care.38 Even post-transfer, young adults may remain under their parent's insurance coverage and are often accompanied to clinic appointments by the primary insurance holder, thereby continuing the role established in childhood. Patients may be overwhelmed by self-care and decision-making responsibilities, particularly when confronted by difficult "realities" of increasing morbidity and shorter life expectancies. The timing of transfer often coincides with other stressful situations, including making educational, vocational, and relationship decisions. Post-transfer, many patients are faced with a loss or change of medical insurance and an increase in personal financial responsibilities. The regionalization of ACHD care often leads to long travel distances and may be impractical for young adults with limited finances and resources.39 In addition to medical providers, parents are to be credited for their children reaching adolescence and young adulthood, as they ensured their children attended medical appointments and adhered with medication regimens. Parents were also required to provide informed consent for all diagnostic, surgical, and interventional procedures. Many adults with CHD, however, recall parental overprotection during their teenage years.40-43 Parents may be concerned about the possibility that their adolescent and young adult children might be less vigilant to health care needs and thus receive suboptimal cardiac care. Hutchinson et al. found that almost one-third of parents resisted the idea of their children seeing health care providers on their own, but this figure was reduced to 15% following education regarding the importance of this process.44 In addition, parents often become very attached to pediatric care providers who saved or prolonged the lives of their children. Pediatric cardiologists may be reluctant to transition and transfer their patients to ACHD cardiologists because of the close relationships they develop with patients and their families. They might also lack confidence in adult providers.45 In addition, for pediatric cardiologists and nurses who entered that subspecialty to work with infants and younger children, it requires a shift in professional attitude to begin treating adolescents like young adults. For example, the discussion of more mature topics of sexuality and substance abuse can be uncomfortable to initiate. It has been suggested that pediatric cardiologists and parents must unlearn previously developed behaviors and promote "closure" to allow the development of relationships with new adult providers.46 As there is an inadequate number of ACHD care providers and clinics,7, 47 it may be difficult to locate and establish ACHD cardiac care. The establishment of adult primary care can also prove difficult, as many internists think they have had inadequate training to take care of adults with childhood onset conditions.48 In addition, adult care providers with less knowledge of the needs of transitioning patients might be less prepared to meet their ongoing educational needs. Transition to adult care occurs at a time when many young adults lose or change their medical insurance coverage. Insurance may be declined or offered at high premiums for patients with CHD49, 50 and, therefore, may prevent continued CHD care. Even when available, the patient may be required by their insurance providers to see a general cardiologist instead of an out-of-network ACHD cardiologist. The development of a comprehensive and fully integrated transition program is a significant undertaking, and health care professionals might feel overwhelmed by this prospect. In order to alleviate such concern, this article does not propose that a comprehensive transition program is the only model to consider. Rather, the goal is to provide a menu of options from which programs can select the ones that best match their needs and resources. A "transition to transition" approach is offered in order to support the introduction as well as the enhancement of transition services. This article will first present preliminary strategies focused on creating an environment of awareness and programmatic commitment. This will be followed by the presentation of specific projects that target various components of the transition process. Table 1 provides a summary of these strategies. One's personal knowledge can be enhanced through a review of key journal articles and relevant Internet resources. Knowledge of the developmental stages of adolescence and the impact of chronic illness are essential.51 Individuals are encouraged to begin with a review of specific transition guidelines, such as those provided by the American Society for Adolescent Medicine, the UK Department of Health, the Canadian Pediatric Society, and the American Academy of Pediatrics.19, 20, 24, 25 Once familiarity with general goals of transition has been achieved, individuals should become aware of international guidelines supporting the transition of CHD patients from pediatric-focused to adult-centered cardiology care.4-7 Finally, individuals are encouraged to remain current with the growing body of CHD-specific empirical and review literature.8-10 There are several ways in which to provide transition-focused education to one's colleagues. Depending on one's clinical practice and setting, this may be achieved by formal staff training, in-services, and Grand Rounds. Education, however, would ideally include all members of the health care team with any patient contact (e.g., physicians, nurses, and mid-level providers). Even staff in pediatric cardiology should be about the transition process and to certain such as to the adolescent patient during the process. It can be very to with individuals at other programs of similar and that have transition-focused For example, pediatric cardiology programs in care have and needs than or In addition, it is important to whether there are other departments within one's that have transition services or whether there are adolescent from one's or is crucial to the ongoing of transition programs. of support has been identified as one of the to In addition, many adult providers not feel to provide care for patients with congenital conditions and for their professional educational needs should be midlevel providers, nurses, health and staff key roles in the of patient transition. education may be offered by all individuals with patient are often best to provide individualized education and counseling, and education in is a of many transition and Within pediatric clinic there can be time to transition provide and Many will they are and encouraged to This process requires staff time and Although financial (e.g., clinic be they should not the implementation of transition several of the strategies in the can be provided at In a recent fewer than of pediatric cystic a strong financial impact of establishing a transition It is to develop and with other who issues of transition. 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There are many to developing a transition program and the following of strategies is not to be The implementation of all components is and may be Rather, a program can several projects best to their individual needs and resources. include the and of the and of the and aspects of the and with projects might provide for the development of an comprehensive The of a transition has been identified as one of the first and recommended by ACHD 20, the of transition and to The findings in adolescents with that identified key would alleviate regarding A transition should be than to the transition program and have time. 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In a study of parents of to with special health care of parents had transition with their child's but only had a for changing health care needs and to a physician who provides adult In a of parents of children with special care only discussions with their providers regarding adult providers, health care in health and for their child to take increasing than of cystic patients transferred at 19 years had written of self-management skills.28 There therefore, for in the preparation of patients and for transition and transfer to adult-focused care. a of successful follow-up at a specialized ACHD center is in the medical regarding the need for ACHD professionals should with patients of all in order to establish with with adolescents without the parents present young patients an to their and as their is to establish the practice of independent patient in Although 12 years of age is likely for many patients, the timing must be flexible and developmental factors must be This independent time may occur during the physical or toward the end of the clinic Adolescents may feel more with a provider Although this requires by patients, family and the health care Adolescents with that to to their health care providers more and contributed to increased independence and In a of parental of parents their having an independent with providers the patient young patients have independent or their to be It is the responsibility of care providers to this independent and provide time to address patient adolescents may feel more by or and programs should develop guidelines with to A significant of successful transfer to adult care is the independent attendance of the patient at pediatric cardiology an indication that the health care responsibility has shifted to the should be encouraged to contact the to medication and of their care the that it is health care providers can include young patients in the decision-making process (e.g., timing to with social or These patient behaviors are important in the transition of the responsibility of health care management from the family to the patient. 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For individuals and programs to transition first are focused on creating an environment of awareness and programmatic commitment. developing transition programs should projects that are toward their needs and resources. Although programs might in their specific transition the key and transition strategies can address the needs and provide experiences for all key including patients, family and health care providers. of

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