1 Introduction

Congenital heart disease (CHD) is the most common congenital defect diagnosed in 9 per 1,000 newborns worldwide [1]. Since these defects are of congenital nature, patients are born with this condition and remain affected throughout their entire life. Advances in prenatal diagnostic techniques, pediatric cardiosurgical procedures, drug development, and long-term management of comorbidities resulted in a significant improvement of the life expectancy of affected children. In developed countries, about 9 out of 10 children with CHD nowadays reach adulthood [2]. The number of adult patients is currently exceeding the number of children with CHD [3, 4].

Although these improved survival rates illustrate the optimized prospects of patients, evidence demonstrated that about 50% of patients, with moderate to highly complex heart lesions, experience life-threatening complications during adulthood [5, 6]. In order to prevent, treat, and manage complications and comorbidities such as heart failure, arrhythmias, and pulmonary hypertension, specialized cardiac care throughout life is recommended [7–11].

Lifelong specialized care should, however, comprehensively address the specific healthcare needs of patients at each respective stage in life. Previous studies demonstrated that the biopsychosocial needs of patients differ significantly during childhood, adolescence, (young) adulthood, and older age [8, 12]. During childhood, care focuses predominantly on diagnosis, treatment, and safeguarding survival. Most children with CHD are therefore cared for by pediatric cardiologists in tertiary care centers. As patients grow older, their healthcare needs change, and the focus of care gradually shifts toward supporting patients in their self-care process, preventing complications, and guaranteeing a satisfactory quality of life. Since the needs of adults with CHD differ profoundly from the needs of children (and their parents), a change of the healthcare setting and team is mandatory. Adolescents with CHD thus need to be transferred from pediatric cardiology to a care program addressing the set of needs of adult patients. Adolescents must, however, become prepared for this transfer to adult congenital heart disease (ACHD) care as new roles, responsibilities, and tasks are to be taken up once patients arrive at the ACHD program. This preparation is highly recommended to be provided as part of a transition program. Such a care program is established parallel to the natural maturation process of individuals from childhood over adolescence to adulthood. Although the importance of transferring adolescents with CHD from pediatric to ACHD care is well established, the development, implementation, and evaluation of transition programs in clinical practice are progressing at a slower pace.

This chapter aims to define the concepts of transfer and transition and to describe the rationale, structure, process, and outcomes of both transfer and transition.

2 Transfer and Transition: Definitions

Transfer and transition are two interrelated though distinguishable concepts that are often – incorrectly – used as synonyms for one another. The inconsistent use of these concepts might originate from the current lack of a uniform standardized definition. When reviewing the current body of literature, one finds a wide variety of definitions for transfer and transition. Furthermore, constructs such as readiness to transfer/transition, transition program, transition process, transition planning, and transitional care are retrieved in literature as well [13]. A clear definition of these concepts is, however, important.

Transfer has been defined as “an event or series of events through which adolescents and young adults with chronic physical and medical conditions move their care from a pediatric to an adult healthcare environment” [14]. Transfer of care includes the relocation of care from a pediatric to adult-oriented healthcare setting as a mean to guarantee that patients receive continuous but developmentally appropriate care as they age [15]. Since the healthcare needs of patients with CHD evolve over time, an adaptation of the healthcare environment is mandatory. Therefore, it is recommended to transfer patients with CHD from a pediatric cardiology care program toward an ACHD care center, if such a care setting is available within the region [16].

Based on the transition theory of Meleis and Schumacher [17], transitions are, from a general point of view, passages a person makes from one life phase, situation, social role, or physical condition to another. This theory distinguishes four different types of transition: health/illness transition, developmental transition, situational transition, and organizational transition [17]. Transitional care for young people affected with a chronic condition, such as CHD, focuses primarily on the developmental transition experienced by young people with and without a chronic condition during adolescence. A developmental transition is accordingly defined as “the evolution of an individual with a chronic condition from a dependent child to an independent adult.” Transition is, therefore, defined as “the process by which adolescents and young adults with chronic childhood illness are prepared to take charge over their lives and their health in adulthood” [14]. There is a general consensus that an abrupt unprepared transfer toward adult care should be avoided at the maximum. Patients should receive guidance and support enabling them to gradually prepare themselves for the responsibilities, tasks, and expectations to be fulfilled in adult life and healthcare. It is therefore recommended to foresee a transition period or process during which patients receive supported holistic care. Although it is frequently stated that a transition process aims to prepare patients for the transfer of care, the transition process does not need to end once the patient is transferred to ACHD care [14, 18]. In some cases, patients reach adult age and are transferred to ACHD care, but there can still be a need for additional guidance and support to manage psychosocial challenges, master self-care skills, or gain additional disease-related knowledge.

3 Transfer of Care

3.1 Rationale for Transfer of Care from Pediatric Cardiology to Adult-Oriented Care

When the healthcare needs of patients evolve as they are growing up, a transfer of care toward a healthcare setting better addressing the medical, psychosocial, educational, and behavioral needs of adults with CHD is mandatory. From a medical point of view, the needs of adult patients differ substantially from the care needed by children with CHD. Prevention of long-term complications, such as heart failure or pulmonary hypertension, as well as the management of cardiac and noncardiac comorbidities, requires the input of healthcare professionals specialized in the care for adults (with CHD). Pediatricians experienced in the care for children with CHD are often not familiar with adult-onset complications or issues such as pregnancy, sexuality, and family planning. In order to ensure that patients receive high-quality, specialized care addressing their age-related healthcare needs, a transfer of care from pediatric cardiology to an ACHD program is necessary.

Furthermore, in some countries, regions, or jurisdictions, a legal framework determines which age groups have to enter pediatric or adult care, respectively. In many countries, patients are no longer allowed to enter pediatric care from the age of 16, 18, or 21 years. In such cases, patients are often forced to transfer care toward an adult setting at a predefined age based on a policy.

Although this transfer of care is very important in order to provide continuous, age-appropriate care to adults with CHD, patients and their families are found to experience worries, fears, and anxiety when facing this change of settings. Many patients report reluctance to leave their familiar surroundings at pediatric cardiology. On the one hand, they appear to perceive adult care as unsupportive, less nurturing, fragmented, busier, and focusing on individualized care [19, 20]. On the other hand, however, patients agreed that although transition toward adulthood is a stressful event, it provides an opportunity to gain independence, self-esteem, and expertise in managing life and health [19, 20]. Although a transfer of care is characterized by a relocation of care, involvement of the pediatric care team is still possible. Since there is currently a relatively small number of trained ACHD cardiologists available in some regions or countries, joint ventures between pediatric and adult cardiology programs are stimulated. The interaction between these two related but distinctive disciplines is mandatory to provide comprehensive care to patients along their life spectrum.

3.2 Transfer of Care: How to Organize?

Key elements of a transfer from pediatric cardiology to an ACHD care program are described in various expert-based recommendations and task forces. Professional organizations such as the American College of Cardiology, American Heart Association, American Academy of Pediatrics, European Society of Cardiology, and Canadian Cardiovascular Society have published recommendations regarding the transfer of care for young people with CHD over the past decade [7–10, 18, 21, 22]. All these documents underwrite the importance of perceiving the transfer of care as a key element of a comprehensive transition program. Based on these recommendations, the following key elements of transfer of care are identified.

3.2.1 Introduction to the Concept of Transfer

  • Patients, parents, and carers should be informed about the importance, advantages, objectives, and implications of the actual handing off of the responsibility of care to the (young) adult patient and an ACHD care team. An early introduction of the concept of transfer should occur around the age of 12 years [7, 10, 18].

  • The multidisciplinary healthcare team should be knowledgeable about the principles of transfer (and transition). Physicians and nurses should be informed about the rationale, requirements, and advantages of transfer [9, 23].

3.2.2 Timing of Transfer

  • The timing at which the actual transfer is carried out should be based on the patient’s level of developmental maturity [18] and an assessment of the patient’s readiness to transfer [24].

  • In hospitals or centers where an institutional or national transfer policy determines that the timing of the transfer should be based on the chronological age of the patient (e.g., 16–18 years) [7, 8], flexibility on that timing should be provided in relation to the needs of the patient.

  • A transfer of care can only be carried out during a period of medical stability [8]. Transfer of care should be avoided if there are still pending medical or surgical issues [18].

  • Patients should be prepared for the upcoming transfer toward ACHD care through an educational process which prepares the adolescent to assume increasing responsibility, achieve developmental milestones, and become ready for the actual transfer of care [18].

3.2.3 Implementation of Transfer of Care

  • The transfer of care should be implemented into practice as a coordinated systematic process, including the development of a written transfer plan based on the individual needs of the patient [7, 8, 18], an actual or virtual pre-transfer tour at the ACHD care program providing the patient a chance to meet and greet the ACHD care team and have a look at the adult clinic, and a collaborative link between pediatric cardiology and a regional ACHD center in order to safeguard an undisrupted transfer of care.

  • Transfer of care should be managed and coordinated by a transfer/transition coordinator, who ideally is affiliated with the pediatric and adult care programs, respectively. Such a coordinating role could be appointed to a clinic nurse, advanced practice nurse, or a clinical nurse specialist [8]. This person will have the responsibility of supporting and guiding the patient through the entire transfer process. Such a coordinator should manage the communication between pediatric and adult care, prevent or solve arising problems in the handing off, and serve as a connecting link between pediatric and adult care programs.

  • The destination of transfer should be determined on an individualized level addressing the needs of the patient. This transfer destination should be chosen in line with the current guidelines for ACHD care management [9]. After an initial post-transfer clinical assessment performed by a specialized ACHD cardiologist, the most appropriate level of adult care should be determined based on an established algorithm for ongoing follow-up of adults with CHD [9]. Based on this initial risk stratification, the most appropriate setting, level, and frequency of follow-up visits should be determined. The expert-recommended levels of follow-up care are as follows:

    • Level 1 – Specialist ACHD Care: Care that is exclusively provided by a specialized ACHD cardiologist in a regional ACHD clinic but can also be established at a satellite center [7, 9]. Satellite centers are regional hospitals in which a specialized cardiologist performs outpatient visits for adults with CHD [25]. Patients who are diagnosed with complex cardiac conditions are recommended to receive care at this level [7].

    • Level 2 – Shared Care: Care that is provided by a general cardiologist who cares for patients with CHD in close collaboration with an ACHD care team. This collaboration requires sending out reports of the outpatient visits performed by the general cardiologist toward the ACHD specialist center [7, 25]. Patients affected by a mild to moderate heart lesion are advised to receive their cardiac follow-up visits in a shared care setting.

    • Level 3 – Nonspecialist Care: Care that is provided by a general cardiologist or general practitioner/family physician without any collaboration with an ACHD care program is defined as nonspecialist care [7, 9, 25]. Patients with CHD who are supposed to have a low risk for developing complications, typically patients with mild heart defects, are recommended to receive nonspecialist care. In case complications do occur, a seamless referral to specialized ACHD care must be guaranteed (7, 9).

  • The relocation of care requires a transfer of the medical file of the patient toward the ACHD healthcare team. A detailed summary of the patient’s medical history, past and current cardiac diagnoses and interventions, most recent results of medical investigations or lab analyses, current medical regimen, and comorbidities should be sent to the ACHD team. Special attention should be paid to additional psychosocial issues which might arise during the developmental transition toward adulthood such as questions related to educational/vocational choices, treatment adherence, family planning, end-of-life choices, etc. [9, 18].

  • The timing of transfer, transfer destination, and important practical arrangements related to the transfer of care should be formalized in a written transfer plan. Such a plan should be developed in close collaboration with the patient and parents. Furthermore, it is recommended to provide the patient, family, and ACHD care team with an accompanying transfer letter containing detailed information on the importance of lifelong cardiac care with instructions on the most appropriate level of care and frequency of outpatient visits [18].

3.3 Evidence-Based Assessment of Outcomes of Transfer

Transfer of care has the primary objective to provide uninterrupted, developmentally appropriate, high-quality care along the life spectrum of patients with CHD. To assess the achieved results of this change of settings, multiple outcomes can be evaluated. Firstly, an assessment of the healthcare services use of patients before, during, and after the transfer of care can be performed. Seamless continuation of cardiac follow-up visits is one of the most important end points targeted by transfer of care. Based on the established algorithm for ACHD follow-up care [7], patients are referred to a specific level of adult care with a recommended frequency of follow-up visits. Patients with highly complex CHD, for example, who have an increased risk for developing complications, are advised to have outpatient visits in a regional ACHD center every 6 to 12 months. An assessment of the setting, type of healthcare professional, and time interval between visits provides insights into the adherence of patients and physicians to ACHD care guidelines. Hence, an evaluation of the post-transfer retention rate in cardiac care is highly valuable when assessing the success rate of transfer of care. Previous studies assessed this outcome parameter. Reid and coworkers, for example, investigated if young adults with moderate to complex CHD had at least one appointment at a regional ACHD center after their transfer from pediatric cardiology. They reported that 47% of young adults successfully transferred to adult care in a timely manner [26]. Goossens and colleagues categorized young adults with CHD as being in appropriate follow-up care if they received care in a setting that met at least the minimally recommended level of care. About 10% of the Belgian sample did, however, not receive follow-up at the recommended care level [25]. A recent study performed in Boston (USA) assessed the adherence to the ACC/AHA 2008 care guidelines in terms of the level and frequency of ACHD follow-up care. This study reported that although most patients still received specialist CHD care at the age of 23 years, about three-quarter of them remained in pediatric cardiac care. Of those patients who received care in a formalized pediatric or ACHD setting, the recommended frequency of visits was implemented in more than 90% of patients [27]. Although the evaluation of continuity of cardiac care is very important when assessing the outcomes of transferring care, there is currently no uniform operational definition available for this parameter. When looking into literature, several definitions of a successful transfer of care can be found [25, 26, 28–35]. Definitions primarily differ in terms of the setting of care, duration of the time interval, and the data sources used to evaluate this outcome.

Secondly, assessing patients’ experiences and satisfaction with delivered care is another way of evaluating the outcomes of transfer of care. Evidence demonstrated that the transfer to adult care poses challenges for the young patient and the family. Often this event is experienced as disjointed, and adjusting to the new healthcare setting appeared to be difficult. A metasynthesis performed by Fegran and colleagues concluded that most young patients felt themselves to be kind of limbo between the different cultures of pediatric and adult care. Overall, patients’ experiences could be categorized into four themes. First, patients faced changes in significant relationships they established in the past. The feeling of having to let go without knowing what the future might bring was prominently expressed. Second, patients felt they needed to adapt themselves to the cultural differences between the pediatric and adult environment. Some patients adjusted to the new responsibilities required in adult care and subsequently found this freedom beneficial for their development, whereas others wanted a break from the disease-focused routine care and were susceptible for dropping out of care. Third, most adolescents agreed that the timing of transfer could be based on the chronological age, although they also indicated that the actual timing should be decided by considering both age and the readiness of patients to transfer. Finally, patients experienced a shift in ownership of their condition and their own personality during the transfer of care. While some patients were reluctant to assume responsibility, some others experienced the transfer as a positively forced movement toward independence. Some patients appreciated being involved in decision-making and took the opportunity to become self-caring autonomous growing adults, gradually taking over the role their parents fulfilled in the past [36].

3.4 Readiness to Transfer

Performing a transfer of care at a predefined chronological age is largely debated since it does not adequately address the differences between adolescents in their achievement of developmental milestones. Ideally the actual moment of transfer should be based on the level of developmental maturity of individual patients. Measuring patients’ level of maturity is very challenging since no (standardized) tool currently exists to assess this concept. Therefore, alternative strategies such as the assessment of patients’ readiness to transfer have been proposed. Readiness to transfer can be defined as the adolescents’ ability and desire to ascertain independence and autonomy in managing health, healthcare, and adult life [24].

Nowadays, the number of instruments developed to assess patients’ transfer readiness is growing steadily. Such tools can help in the identification of patients at risk for a problematic transfer to adult care and can track patients’ development in terms of competencies, skills, and knowledge throughout the transition process. A large variability is, however, observed in the format and content of these readiness instruments, ranging from paper-based, self-reported questionnaires to be completed during an outpatient visit to semi-structured interview guides used by the transition coordinator. Furthermore, different series of domains and items appeared to be evaluated with tools most frequently focusing on an assessment of self-management skills and knowledge of patients. In the existing arsenal of readiness instruments, both generic and disease-specific tools can be found. Unfortunately, to date none of the currently available tools has well-established evidence demonstrating good reliability and validity [37]. Future studies investigating the psychometric properties of such instruments are highly needed in order to provide researchers and clinicians with a set of well-validated readiness instruments [37].

4 Transition

4.1 Rationale for Transitional Care in Adolescents with CHD

Transition in healthcare represents but one part of the wider transition from a dependent child toward an independent self-caring adult [38]. Transition to adulthood is an important “stepping stone” in the development of adolescents with and without a chronic condition. For young people who are affected by a chronic condition, additional challenges occur during this transition process. Growing up with CHD brings along numerous challenges. Adolescence can start in patients as young as 10 years of age. Most people move out of this developmental phase and on to adulthood around 18 years of age. The onset of puberty and adolescence, however, can be delayed in youngsters with chronic health conditions. This developmental delay can lead to these individuals having lower levels of self-esteem and experiencing difficulties in taking on responsibilities and requiring the help of their parents for a longer period of time [39].

Transition toward adult care represents a large set of changes occurring during a stressful developmental life phase. This period represents a life phase in which patients are assumed to gain a greater sense of independence, develop a positive sense of self, and establish expertise in the management of their health and adult life [19]. As stated by the American Academy of Pediatrics, “the goal of transition in healthcare for young adults with special healthcare needs is to maximize life-long 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” [22, 40]. Adolescents with CHD have multiple healthcare needs such as cardiac and noncardiac medical and surgical needs because of coexisting anomalies and health maintenance needs such as vaccinations, counseling related to nutrition, healthy lifestyle, sexuality, and contraception. Furthermore, specific psychosocial issues are identified in this population.

Adolescence in general is a vulnerable period in many different ways. Adolescents are challenged to achieve a large set of developmental tasks such as the development of a sense of self-esteem, identity, autonomy, self-image, and sexuality. Autonomy is an important aspect of teenagers’ psychosocial development. Transition services within healthcare should provide individuals with the information and skills they require to be autonomous.

Autonomy is derived from the Greek meaning “self-rule” (auto, self; nomos, rule). Autonomy refers to an individual’s ability to choose for themselves in order to direct their own life. John Stuart Mill, a nineteenth-century philosopher, wrote about autonomy suggesting it was linked to an individual’s happiness. He believed that an individual was most able to make their own life choices but autonomy is, however, restricted by external influences such as law and social traditions. However, autonomy requires the individual to have the mandatory knowledge and wherewithal to understand all the options. Having choices and being autonomous in making decisions is believed to promote physical and psychological well-being, whereas if a person is not given autonomy, the loss of control creates helplessness [41].

Adolescents affected by a heart lesion furthermore have to deal with the management of ongoing cardiac care, hospitalizations, medication regimens, re-interventions, and long-term complications. The medical demands of their chronic condition might disturb the adolescent’s self-image and self-esteem and delay the completion of normal developmental tasks [42]. Previous studies reported that adolescents with CHD have a higher likelihood of developing psychosocial or mental health issues as compared to peers, with a predominance of mood and anxiety disorders [43]. Evidence demonstrated that adolescents with CHD experience social isolation, low self-esteem, fear of rejection, discrimination, bullying, and feelings of embarrassment [42]. Overall, the current evidence base indicated that transition to adulthood and the subsequent transfer to adult care are a challenging phase for young people with CHD. Additional support, guidance, and counseling are therefore mandatory in order to maximize patients’ changes of obtaining their maximal level of functioning in adulthood [36].

The provision of transitional care has for a long time been recognized as being a very important component of the planned care process for patients with CHD. In 2001, the importance of transitional care for patients with CHD was illustrated for the first time at the Bethesda Conference on the Care for the Adult with CHD with the publication of different expert-based task force reports [9, 44, 45]. Twelve years later, an assessment of the currently available transition service provision becomes mandatory, critically scrutinizing if the projected aims are achieved in daily clinical practice.

4.2 Transitional Care: How to Organize?

Based on a set of guidelines, recommendations, and task forces, the key elements of transition can be identified [18, 22, 40]:

  • The process of transition should be individualized and should take the respective developmental stage of each individual patient into consideration [39].

  • Each patient should be given a care plan representing a document holding information regarding the stage within the transition process where the patient can currently be situated [46]. This care plan should be developed starting in the pediatric setting and continue through to the ACHD clinic accompanying the patient throughout the transition process. There are many examples of transition care plans, some being generic for all types of chronic conditions, while others are being specific to CHD. It is not important which type of care plan is used as long as the care plan is used for the documentation of information given to the patient.

  • In order for adults with CHD to live the fullest life they can, it is important that all people involved in their lives have the adequate information to support patients to make healthy decisions. Anecdotal evidence suggests that patients with CHD are less active than their healthier counterparts due not only to limitations from their condition but also from restrictions imposed on them by physicians, teachers, and their parents [46–49]. It is not only the clinical team that needs to be knowledgeable about CHD management and its impact, but also the young people and their parents need to be informed in a comprehensive way.

  • During the transition process information should be given related to healthy lifestyle choices [18, 22, 40]. Patients should be aware of the consequences of risky behaviors such as smoking or taking illegal drugs. The information should be given with an open and honest approach, and the individual must be made aware that should they choose to make risky lifestyle choices and become unwell, that they need to contact the CHD department.

  • The recurrence risks of CHD should be addressed as part of the transition process, as well as issues related to contraception and pregnancy. It is important for males as well as females to be advised about the recurrent risks of CHD. Contraception and pregnancy need to be discussed on an individualized basis.

  • The ESC guidelines on exercise suggest that some groups of individuals should refrain from medium- and high-impact exercise [46–49]. These guidelines are, however, based on expert opinion rather than scientific facts. Based on these recommendations, it is advised to perform a cardiopulmonary exercise test to establish if the patient is limited by the heart condition, prior to giving exercise advice. There are some lesions for which competitive sports are not deemed feasible due to the complexity of the condition and the likelihood of experiencing arrhythmia. This is applicable to conditions such as Eisenmenger syndrome, pulmonary arterial hypertension, univentricular hearts, coronary artery abnormalities, Ebstein anomaly, congenitally corrected transposition of the great arteries, and transposition of the great arteries repaired by atrial switch or Rastelli procedure [46–49].

  • Information should be given to patients on an individualized basis furthermore depending on their level of understanding and willingness to “hear” the information provided. On one hand, some individuals are captive to hear all about their heart condition and its implications in terms of future healthcare needs. In these patients, the transition process can potentially be experienced as a smooth and succinct process. Some individuals, on the other hand, may need lots of time and input enabling them to feel ready to talk about their heart condition and be given disease-related information. These individuals might benefit from a longer transition process which can potentially continue into the ACHD service after the actual transfer of care.

  • For some individuals, the clinical environment is not the ideal place to learn about their heart condition. Hence, some patients rather prefer to receive education in group sessions, while others like to receive education during a one-to-one conversation with healthcare providers. Therefore, transition services should accommodate both individualized and group session methods so that patients can utilize the best service for them. There are anecdotal reports of successful group transition sessions where the patients and their families attend different sessions and have opportunities to meet their adult teams and peers.

  • Over the last decade, there have been several calls from the American Heart Association/American College of Cardiology to increase the provision of transition clinics that aim to support patients moving into adult life and ACHD care. In their 2008 guidelines, these societies furthermore indicated an increased need for sufficient resources in order to enlarge the numbers of allied healthcare professionals working in the field of ACHD care to mimic the levels seen in the pediatric setting [10].

  • The ACC/AHA guidelines on the Management of Adults with Congenital Heart Disease recommend that the transition process should start at the age of 12 years [10]. Preparing an individual for the transfer of care to the adult department and the gradual shift toward adulthood cannot start too early. The process of transition should start at the point of diagnosis as “envisioning a future” is an important aspect of living with any chronic health condition [50].

  • It is during the transition process that the young person and their families should receive information about growing up with the heart lesion and its implications for adult life. This information should be delivered by an individual who has the relevant knowledge base to answer individual questions of patients and parents. Ideally this person would be a health professional working within the transition team, such as a transition clinical nurse specialist or advanced nurse practitioner. An affiliation within either the pediatric or ACHD team is an important requirement. The information given during the transition process should be individualized to the patients’ medical status and developmental stage. Information regarding the heart condition, risks factors of comorbidities and complications, long-term prognosis, healthy lifestyle issues, medication regimen, sexual health, preventive measures for infective endocarditis, physical exercise limits, and requirements of ACHD care should be provided through repetitive educational interventions.

Practical strategies for optimal delivery of transition services and best practices for the transition process in adolescents with CHD are discussed in Chap. 11.

In order for the transition process to take place, physicians and nurses require an in-depth understanding of both the pediatric and adult setting to facilitate a smooth transition between these two departments. Firm links need to be formed between the pediatric and adult care programs where the patients will be transferring to.

There are many different transition processes described, but it is important to establish a service that works for the individual center, as there is no “one size fits all” approach applicable. Some transition services have adopted the “adolescent clinic approach,” where joint clinics are organized by both the pediatric and adult care team. Other centers prefer to adopt the “nurse-led approach,” where a team of clinical nurse specialists coordinates the transition process and meets the patients, while they are in the pediatric department. Within such a model, the transition coordinator stays with the patients when moving through to the adult department. To date, there is unfortunately no empirical evidence indicating that one transitional care model is better than another. One of the most important requirements is to provide a transition service addressing the needs of the patients and their families. There are growing numbers of CHD patients moving through to the adult departments, and therefore whichever system the service adopts, it must be able to support these growing numbers. It should be supported to involve young people in the design of transition services guaranteeing to meet patients’ needs and expectations [51]. More transition models are described in Chap. 11.

When commencing the transition process, it is useful to observe the family dynamics and identify who is leading the healthcare process. Often during the early transition phase, parents are primarily responsible for the delivery of medication and the arrangement of hospital appointments. It can be difficult for parents to relinquish some of the responsibilities to their child as they have often been responsible for delivering their care from birth. It can be useful to look at other specialties to learn more about transition. A study undertaken in young adults with inflammatory bowel disease reported that the earlier the age of diagnosis, the less involved the individual was in medical decision-making as an adult [52]. This would suggest that the information given to the family would be generally aimed toward the parents and they would be the main decision-makers. This can be very important information when planning transition services. Therefore healthcare providers need to work with all family members that are involved in the child’s care so that the family as a unit develops the skills for a successful transition.

4.3 Assessment of Outcomes

Providing transitional care should be considered as a complex intervention. In order to deliver a successful transition service, it needs to be a service that can be developed and will evolve over time based on the insights gained longitudinally. All the components of a transition service need to work together and are therefore interrelated. Complexity theory can be used to analyze this complex transition system as it is concerned with exploring the whole, looking at connectedness, and providing feedback at multiple stages. This way of analyzing a system of care allows for adaptive systems that can learn from positive and negative feedback [51].

According to the guidelines set out by National Health Service (NHS) England and the recommendations of the AHA, a transition would be considered as successful if all patients start with the systemic staged change at the age of 12 years. Furthermore, they should pass seamlessly through from the pediatric CHD service to the ACHD service. Additionally, at this stage patients are considered to be fully knowledgeable about their condition and prepared for their individual medical path. This is, however, not a linear process and cannot be evaluated using standardized protocols and guidelines. The human interactions and experiences of individuals shape how they develop skills. Each component of the transition system has, however, its impact on these respective experiences. This can be explained using the butterfly effect – where even small changes in one section of the system produce large effects in another section of the system. So in relation to transition, if a family is unwilling for their child to start taking some responsibility for their condition then there can be larger consequences with autonomy and the transfer process. Therefore it is necessary to treat each family and adolescent individually and assess each transition process on its own merit. Whole services can be deemed successful if the numbers of patients “lost to follow-up” reduces and the number of patients given completed care plans increases, but the individual’s experience is also important.