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. 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