Transition of care has been defined by the Society of Adolescent Medicine as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-centred health systems” [33]. Transitional care research has been conducted within a variety of chronic illnesses, including cerebral palsy, diabetes, transplantation, cardiac care, and oncology [34–38]. A number of challenges have been well-documented when individuals turn 18- years- old and transfer their care from a paediatric to an adult healthcare centre. These often include non-compliance with life-saving medication regimens [39]; loss to follow-up; and increased hospitalizations post transfer of care [40–43]. Illness-specific difficulties have also been documented in the literature. For example, in terms of renal transplant patients, it has been documented that young adults are four times more likely to lose their organ grafts due to lack of medication adherence as compared to any other age group [44], suggesting that outcomes are the worst for this particular age group [45].

Developmental issues are often suspect of underlying many of these poor medical outcomes. The adolescent/young adult brain is still in a stage of development, particularly the frontal lobe [46]. The frontal lobes have been found to be responsible for executive functioning, including planning and reasoning skills. The interested reader is referred to Colver and Longwell (2015) for a review of adolescent brain development. Within the context of healthcare, an individual would require these frontal lobe functions for: making and attending appointments, taking one’s medication, and, possibly, engaging in healthy lifestyle modifications (e.g., healthy dietary changes and routine blood tests). Therefore, without these abilities fully acquired, one can imagine that carrying out the above tasks independently might be difficult and result in poor healthcare compliance. Due to these developmental issues, young adults who have experienced the transition from a paediatric to adult bariatric surgery centre may desire (and benefit from) ongoing and age appropriate parental and healthcare provider support [47].

We can also learn about transition of care issues by turning to the “emerging adulthood ” literature. Arnett [48] has written extensively on the idea of “emerging adulthood”. This is proposed to be a stage of life in which individuals aged 18–25 are believed to be “in-between” being an adolescent and being an adult. In fact, when individuals within this age group were asked whether they believe themselves to be adults they answered that in some ways they do feel like adults, but, in other ways they do not [49]. During this stage of life, individuals have not yet decided on where they belong in terms of many cultural expectations and identity, such as romance, vocation, and life outlooks. Many potential future directions remain possible, and the opportunity to explore life in an independent manner is often greater during this period of one’s life compared to other phases within one’s development [48]. A recent study examined experiences of young adult bariatric surgery patients who transitioned their care from a paediatric centre to an adult surgical centre [47]. Participants interviewed in this study reported that they felt they had not yet figured out “who they are” and that it would be beneficial for adult healthcare providers to be more sensitive to these issues. They expressed a desire for adult healthcare providers to be more sensitive to their unique needs (as young adults). In addition to their healthcare being in a time of transition, they themselves actually felt that they were in a time of transition and that their identity was still forming. Consistent with this was a desire to be allowed to be “irresponsible” and concern that it might be difficult to adhere to post-surgical guidelines given this lingering desire to not be as accountable as an adult would be [47].

Several guidelines have been established for transition of care within the context of chronic medical illness and disease. These guidelines have been published in the form of consensus statements and committee guidelines for medical issues, such as organ transplantation, diabetes care, and special care needs. Recommendations often include (1) transfer information being provided during adolescence and if that is not possible then at least 1 year prior to transfer [44, 50]; (2) a transition “champion” (often referred to as a coordinator) should be in place to ensure transition services are organized and coordinated [35, 44, 51]; (3) older adolescents should begin to take on management of their health prior to transfer and parents can aid in this transition [35, 44, 50]; (4) transition clinics should be implemented which often involve the adult healthcare professionals meeting with the older adolescent patient prior to transfer of care along with members from the paediatric team [35, 44]; (5) provision of information to parents and older adolescents concerning different environments within the paediatric versus adult healthcare system [50]; and, finally (6) prior to the transfer process it has been recommended that the paediatric team send along an assessment of transfer readiness in addition to any important medical and psychosocial information (i.e. medical concerns; psychiatric issues; current medications) concerning the patient [35, 44, 50, 52]. Please see Table 20.2 for a summary of these recommendations.

Although many guidelines exist to guide the process of transfer of care between the paediatric and adult healthcare systems , fewer studies have focused on changes in patient outcomes as a result of these initiatives. A recent study found that transition clinic attendance improved renal function for kidney transplant patients in addition to overall adherence 1 year following the transfer of care [36]. Cadario and colleagues [53] implemented a number of transition initiatives for adolescents with Type I diabetes and results were favourable. Patients were found to have enhanced glycemic control; improved adherence to appointments; and enhanced service satisfaction as well as earlier attendance to appointments within the adult healthcare system . Services that were implemented included coordinator of transition services; information summary was transferred from the paediatric system to the adult healthcare team; transition clinics; and the involvement of a paediatrician in the first appointment that occurred on the adult side [53]. Also, McDonagh and others [51] found that when transition initiatives were implemented (including templates for individualized transition plans that were based on developmental stages of adolescence as well as a project coordinator and resources for both youth and parents), patients with juvenile idiopathic arthritis had improved patient knowledge as well as the ability to self-manage health-related behaviours. Furthermore, health-related quality of life improved [51]. Therefore, these three studies provide encouraging evidence that implementation of transition services can be beneficial for adolescents prior to their transfer to adult healthcare.

Some researchers have sought to gain a sense of the transition experience and transition initiatives that have been implemented within programs through self-report measures and qualitative research design. For example, Fernandes and colleagues [54] recently surveyed a sample of youth (ages 16–25 years old) that had a variety of childhood onset chronic diseases (including cancer, Type I diabetes, congenital heart disease, and solid organ transplant) as well as their parents. Overall, most patients and parents felt they received adequate education and information regarding the transition of care process. However, participants felt that they did not receive satisfactory education regarding reproductive issues (including birth control and childbearing issues), recreational substance use, as well as future vocational issues in terms of the impact of the ongoing chronic medical condition. In terms of barriers to transfer of care, patients and parents reflected on the emotional bond they have towards the paediatric centre as well as a perceived lack of adult specialty care providers [54]. Within transplant transition of care, McCurdy and colleagues [55] found patients spoke about differences between the paediatric and adult hospital, often citing the former as “more fun” and “nicer”. Participants also remarked that the actual transfer of care was an important event and constituted a significant change; often one that was met with emotions such as disappointment, shock , and sadness [55].

Recently, an international Delphi study examined the key elements important for successful transfer from paediatric to adult healthcare systems [56]. A key element was the importance of having effective communication between the paediatric and adult healthcare centre. This corroborates well with the existing guidelines and patient narratives of transition and transfer of care issues. Overall, consensus statements, guidelines, and the voice of the patient shed light on important elements to incorporate within any type of transition program to allow for a seamless transfer of care from paediatric to adult healthcare for a variety of chronic medical conditions. We will now turn to a discussion on transition issues within the context of obesity and bariatric surgery specifically.

The literature does not provide a great deal of insight with respect to transition of care for young adult bariatric surgery candidates . A recent paper by Shrewsbury and colleagues [57] highlighted the fact that little work has been done to establish guidelines or models of care for transitions in obesity management. In fact, they stated that “there is no obvious transition pathway” from paediatric obesity treatment to adult care (p. 478). Therefore, clinicians and researchers in this area have only been able to turn to the established guidelines and models of care, as described above for other areas of chronic illness and disease. The Toronto Western Hospital Bariatric Surgery Program (TWH-BSP) set out to create a model of transition of care for patients transferring from a paediatric obesity management facility to their adult bariatric surgery program. The team at TWH-BSP researched the impact of this transition care model on young adult transfer patients. We will describe this model of care (below) and our research findings in the hopes of aiding other healthcare clinicians building a transition pathway for this specific population. Let’s return to our patient Sally to illustrate the transition process she would have undergone with the model of care that has been created by our group.

In 2012, TWH-BSP partnered with the Sick Kids Obesity Management Program (STOMP) to create transition initiatives and a clear transition pathway for patients that transferred their care from the Hospital for Sick Children to the Toronto Western Hospital. Please refer to Diagram 20.1 for an illustration of the pathway created for patients transferring their care from STOMP to the TWH-BSP. In order for Sally to begin her treatment at the TWH-BSP, she would have been referred through the Ontario Bariatric Network (OBN) . When an individual is seeking surgical weight loss, they must be referred to either STOMP or the OBN; the latter is a centralized provincial registry. Our team worked closely with the OBN to ensure that patients arriving from our partner paediatric program seamlessly transferred their care into our program. Prior to this transfer, the adult care transition champion (from TWH-BSP) would have been contacted by the transition champion at the paediatric centre (from STOMP) to come and meet with Sally. As we know from the literature described above, transition clinics often ease the transfer process and allow for individuals to become more comfortable with the healthcare professionals that will be involved in their care. During this transition clinic , Sally would not only meet with the TWH-BSP’s transition champion but would also receive a transition resource booklet. This booklet was developed in partnership by both teams and provides our young adults with information regarding what they should expect during the transfer of care, along with the different types of support that can be accessed through the TWH-BSP and their community. Once Sally begins her treatment at the TWH-BSP, she will then undergo her preoperative assessment process with a team of clinicians that have been designated to follow young adult transfers along their surgical and post-operative trajectories. There is one transition clinician from every discipline in the team (psychology/psychiatry; social work; nursing; and dietetics). This allows for consistency of care, which likely allows the transfer patient to be less overwhelmed by the different culture within the adult system and allows them to feel a sense of safety within an environment that is much larger and busier than the paediatric centre. Once Sally has undergone bariatric surgery, she will also receive more frequent follow-up appointments during her routine post-operative care. After the first year of surgery, most patients only receive care on an annual basis. Due to the known challenges with adherence and compliance in this age group, we implemented semi-annual appointments with the designated transition clinicians to ensure that patients feel engaged within the program and that any non-compliance issues will be picked up on fairly quickly. When creating and implementing this program, our hope was that it would allow patients such as Sally to easily and seamlessly transfer their care and continue on with the bariatric surgical process, be it for surgery or post-operative follow-up care.

In order to better understand whether this transition of care model was advantageous for our patients, we conducted a qualitative research study to identify: (1) themes regarding the experience of our young adults (18–24 years old) as they transferred their care from a paediatric to an adult care hospital; (2) transition challenges that young adults experienced upon transfer; and (3) how developmental issues for this population impacted their transition of care experience [47]. Results suggested that there were both negative and positive experiences associated with the transition process . Specifically, some patients would have liked to learn about the transition process even sooner than they did and hoped for a process that was even more explicit than our team had delivered. Participants also cited a desire for more parental involvement and hoped that adult healthcare providers would be more compassionate towards young adults given the fact that they are not “quite adults” and are still learning about who they are. In this regard, patients spoke about themselves as being emerging adults and the impact this has on self-management, such as having a desire to be irresponsible and needing some understanding in that regard. On the positive side, many participants valued having a transition champion that could guide them through the process [47]. We believe these findings are important to consider when it comes to encouraging regular follow-up appointments (i.e. consider asking about parental involvement) and adherence to lifestyle issues (i.e. vitamin use and proper nutrition). Overall, our findings and the experience of our patients fit well with the literature that has been reviewed from chronic healthcare. As discussed, the developmental stage of emerging adulthood also impacted the transition process for our patients. Gaining insight from patients who are undergoing this process can allow for transition programs and healthcare bridging to meet the needs of our patients on an ongoing basis.